NATE DOG'S BLOG

New Travel Channel series, "Making Monsters"

2011-09-21T16:20:00.001-06:00

One of the reasons it's been so difficult to find time to blog this year, is work got really busy in January with the "green-light" to this series, "Making Monsters". It will air on the Travel Channel in four (4), one-hour episodes through the month of October.

Years ago around 2005/2006, I met the monster-making family from Greeley, CO, through a co-worker. Since the day I toured their facility, it was always in the back of my head that this would make for an excellent television series.

It's been a wonderfully hectic year, producing this series, traveling and being on set, while also working on development for a dozen other projects to sell to networks. We've had an amazing, outstanding, A-list quality crew working on this series from start to finish.

With the production of this series, and others for the production company I work for - Warm Springs Productions - I had the opportunity to travel across the country this year, from the bush of Alaska 200 miles from civilization, to the heart of Manhattan, to the Cajun coonass country of Louisiana, and even to Roswell, NM for the UFO Festival.

This is pretty much why it's been so hard to find time to update a blog, or get extra stuff done outside of being with family and working.

Here's a list of some press releases for the "Making Monsters" series:

Media Market Journal - Travel Channel Details ‘Making Monsters’ October 2 Mini-Series Premiere

Broadway World - Travel Channel Features Weekends to Die for Throughout October

SciFi Mafia - MAKING MONSTERS: New Miniseries Goes Behind the Scenes of Creature Creation

Fangoria article - Travel Channel is Making Monsters

Kids & Toy Guns

2011-08-12T11:20:00.000-06:00

Read this article a while ago while on an airplane. Loved it so much that I ripped it out and stuffed it away. Thought I'd post it here as it's a good one - finally some common sense from a journalism columnist in this day and age of ridiculous political correctness and effort to blur the line between the sexes.

With Toy Guns, Kids Know It's A Game
I wrestle with Zak; we play "fight" and he knocks me out; and we shoot toy guns - NERF ones with suction cup ammunition. It's awesome. Totally boy-stuff and the kind of childhood I had - rough-housing, cops/robbers, cowboys/indians, all fun boy games. Love being a part of it with my son and no one's going to take that away from us with any of their efforts at social conditioning.

Year-End Review Poem

2010-12-27T13:49:00.000-07:00

‘Twas the night before New Years, and all through our minds
We reflected on the past, the year left behind.
Many follow our blog, videos, Facebook too
So replacing our newsletter, a year-review poem for you.

Zachary grew up, his development abound
Anat Baniel Method in Arizona, a new therapy we found.
A week we stayed for an intensive session
The therapist taught him unique movement lessons.

Renee turned thirty, a surprise party she got;
And an early party for Nathan, in Illinois for the plot.
A bachelorette party in Vegas, Renee did partake
While daddy and Zaky had guy-time for a break.

In the course of a year, Zak accomplished a ton
Sitting, an iPad, numbers, and pre-school begun.
Botox and phenol twice injected in him,
A therapeutic method, relaxing muscles within.

Vacation we took in the warm month of June
Rocky Mountain National Park, wilderness a-strewn.
Hiking, relaxing, time with Nathan’s family spent,
A welcome escape, a wonderful event.

We started a website for families and parents
By sharing our lives, our family transparent.
It’s a site for those raising an exceptional child,
Episodes, blogs, discussions, community compiled.

We branded, we trademarked, an LLC we did claim,
And called it Exceptional Family TV by name.
We partnered with a local Foundation non-profit
With plans to do much more, and always keep on it.

In July we were called out to Washington, D.C.
To testify in front of the FDA Advisory Committee,
Our experience with Zak and his seizure medication,
How it helped to force his seizures cessation.

And then on to San Francisco we did travel
To participate in a pharmaceutical parent panel.
We weighed in with others on the drug’s success
And how to raise Infantile Spasms awareness.

Work for Nathan, was awesome beyond,
Traveling across the U.S., and even Taiwan.
Supervising Producer, his title at the company,
Increased to include Director of Development for TV.

Shows he produces, and better yet creates,
Finding talent, ideas, pitching to networks, what fate.
With Exceptional Family, nationally published is routine,
Writing monthly columns for Exceptional Parent magazine!

And Renee, she works hard, caring for Zak at home,
Dishes, laundry, therapy, meals all without groan.
Massage work done on extreme part-time basis
With all her to-do, it sure shows her greatness.

In the middle of December surgery Renee had
To clear out girl stuff in her abdomen, very bad.
Recovery was rough, but for Christmas she made it
Hand making gifts and treats, my help she forbade it.

Now the new year approaches, oh what is in store?
Adventure, fun, a new baby … or more?
Renee and Nathan plan a book, maybe, to write
From blog posts and stories going back to Zak’s first night.

Poor Zak is in store for a surgery of the hips
To correct bones’ misshapen from his high tone’s firm grip.
One thing is sure, this Zak he is strong
Recovery will be fast, it won’t take him long.

A cast for six weeks from his chest to his toes
Uncomfortable, yes, maybe worse we suppose.
Although there are many realms of possibility
Improvements it shall make to his range of mobility.

For you friends and family, we wish you the best
In this year that is coming, may you truly be blest.
Now this poem is ending, we must simply deploy
This wish to you, friends and family, hope, peace ‘n joy.

You are near and dear to us, you are loved by us all
We wish you Merry Christmas, Happy New Year, we call.
May this year of our Lord, this twenty-eleven,
Treat you with kindness with wealth abounding in heaven!

Love,
Nathan, Renee & Zachary Charlan

NBC 9News story on Exceptional Family TV

2010-11-17T09:40:00.000-07:00

Read the story here

Update

2010-11-02T19:41:00.000-06:00

I've neglected my blog. I stink. It's nothing more than having too much on my plate, too many projects to handle, too much busyness. It's been over two months since a post. Maybe I haven't had any truly spurring inspiration to write an article yet ... I don't know. In either case, here's a bit of an update with our family.

Renee was pregnant ... then was not. All indications said she was pregnant - one doctor told her she would miscarry, while another one said she got her dates wrong. We were in a waiting game to see what the outcome truly would be. At the 8 week mark, there was no growth, no change, nothing from the 6 week ultrasound. Renee miscarried. It was a painful experience for her, which left her physically, mentally, and spiritually exhausted. I took up everything I could to keep things going to give her time to rest and heal. It was a difficult time.

That's been tough to deal with the rollercoaster of emotions in that regard since it took Renee a lot of strength and courage to be ready to go through pregnancy again.

We're going to begin moving in the direction of adoption as well. Searching for an agency to work with locally, discovering whether we'd do foster, private or international adoption. It'll be another undertaking.

In the meantime, we have EFTV to run, write a monthly article for Exceptional Parent magazine, Zach to take care of, a Special Needs PTA to be involved with, and I was just asked to become part of the board for the Colorado Parent 2 Parent chapter. With work, I'm at the max with producing 58 episodes this year alone and undertaking the development of new series for the company.

So I suppose my absence in writing hasn't been too unexcused. But I shall try a bit more to write, even if just a little, here and there.

Radio Interview on Exceptional Family TV - Autism Women's Network - Aug. 14th 10am Pacific/1pm Eastern

2010-08-13T19:48:00.000-06:00

Listen Live Here

Renee and I will be interviewed by hosts Sharon daVanport & Tricia Kennedy about Exceptional Family TV.

Because it's a women's network, Renee will be doing most of the talking ; )

Saturday, August 14th - 10am Pacific, 11am Mountain, 12pm Central, 1pm Eastern

Call in to talk during the show - 917-889-3527

The show is an hour & a half long.

Parent Panel on Infantile Spasms – Part One

2010-08-06T00:24:00.000-06:00

Renee and I were invited to participate in a parent advisory board/panel on Infantile Spasms (IS). It is a rare disease and according to InfantileSpasmsInfo.Org it’s “an uncommon epilepsy syndrome that typically begins in infancy. Also known as West syndrome, it was first characterized by Dr. William James West in the mid-19th century as he sought help for his own affected child. Infantile spasms is considered to be a “catastrophic childhood epilepsy” due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of IS. Infantile Spasms typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.”

The Parent Advisory Board Meeting was organized and funded by Questcor Pharmaceuticals, the makers of Acthar gel (ACTH), which has been considered the “gold standard” of treatment in the child neurology community since the 1950s. I clearly remember Zachary’s neurologist and the head of the neurology department at Children’s Hospital Denver telling me personally about the “gold standard” treatment consideration for ACTH when Zachary was in the hospital for his seizures.

The discussion and parental input focused on several issues - raising awareness for Infantile Spasms, considered a Rare Disease; creating a community for those who have a child with IS or are considered IS “graduates”, those whom medication helped stop the IS; spreading education and information about IS to parents, pediatricians, and child neurologists; giving back to the IS community; and discussing creative efforts surrounding Infantile Spasms Awareness Week in October.

The panel took place over the weekend of July 31 and August 1 in Palo Alto, CA. There were a total of eight families in attendance. The first evening, we all went out to a dinner to have a casual “meet & greet” experience. Family friends (and fellow Coloradoans) Matt and Tamara Cochran (Episode 10 & Episode 11) were in attendance as well as Chris and Megan Daniel who we met at the FDA hearing.

On Sunday, the formal panel took place, opening up with each family sharing their particular story and journey with Infantile Spasms. It was very interesting to hear each family’s story as each shared a common tale of what they experienced with IS exhibiting itself in their child – a quick spastic movement, bobbing of the head, jerk of the arms/legs, body moving in jack-knife fashion – and these movements happening in succession for a time, called clusters in the IS community.

What surprised me was the vast difference in outcome with the families who had success with IS medication stopping the seizures. Several families’ children developed normally and would be considered “typical” on all levels of development today. Others had underlining conditions such as cerebral palsy (like Zachary), or other brain issues.

Although IS was first medically chronicled in the 1800s, there still is very little information on it. As a rare disease, it affects about 1 out of every 3,200-3,500 children.

On average (45 out of 50 children affected) spasms appear for the first time between three-months to a year-old. According to the InfantileSpasmsInfo.org website, about 70% of IS cases are caused or linked by something to do with the Central Nervous System, brain development abnormalities, or genetic abnormalities.

For Zachary, the underlining cause was the severe brain damage (cerebral palsy) that occurred around his difficult birth.

But in 30% of cases, there is no known cause, and these children have the greatest odds of living a developmentally normal life.

Regardless of the cause, once diagnosed with IS, the goal of any neurologist is to get the seizures stopped as soon as possible. With each “cluster” of seizures, the child is experiencing some additional damage to their brain.

Our personal journey with IS, brought us to a neurologist who was very good and very professional in his care of Zachary. The neurologist wanted to take an aggressive approach to get them stopped immediately, but also be safe in medicating our child. We started on a three-week stint of Vigabatrin/Sabril (recently approved by FDA, but at the time Zach took it, 2007, it had to be purchased through Canada). This did nothing for his seizures. Our neurologist advised us of the “gold standard” for IS treatment, an injectable hormone called ACTH or Acthar gel, as labeled by Questcor Pharmaceuticals. We were advised of the side affects – significant weight gain, possible elevated blood pressure, and I think they told us diabetes too, but our neurologist assured us Zachary would be strictly monitored during treatment to make sure he would be safe.

It was a daily, one-shot injection. After the sixth one, Zachary’s seizures stopped completely. That was Nov. 6, 2007. To this day, he remains seizure free.

After the family stories, the panel switched gears to discuss the history of Questcor as a company, their commitment to the IS community in raising awareness, and ideas for Infantile Spasms Awareness week coming October 11-17, 2010, and for future years.

…to be continued…

Renee's Vlog on Zachary's Non-Verbal Lying

2010-08-04T16:41:00.001-06:00

Zach's a Mac

2010-07-23T17:12:00.016-06:00

We got Zachary an iPad.
At first, this statement, to some, may seems like a rash, expensive purchase of a trendy, fashionable gadget and a ridiculous one at that for a child who is 3 1/2. I could understand how some may take that interpretation.

But I care not.

Because Zach's a Mac, and he's using his apps to educate and communicate.

I'll admit plainly that I bashed the idea of the iPad when it was announced. I have a laptop, I have an iPod, why would anyone need an iPad? Lame. Stupid. Another silly gadget.

About 8 weeks ago, a tech-savvy, gear-crazed friend of mine came over for dinner and brought his brand new iPad (he may have stood in line for hours to be one of the first in Colorado to own one). He extolled the virtues of this fine new piece of gadgetry and how his life was very much improved because of it. I didn't buy into it. Still wasn't enticing for me. Looked cool, but so what?

Then, he quickly downloaded a free "painting/drawing" app and handed the iPad over to Zachary. After careful consideration of what this new "toy" was, he started moving his fingers over the screen, lighting up in excitement when he saw the correlation between action and reaction. He was drawing by using only his fingers as the paintbrush and it made a "swish-swish" sound when he did it. Zach was hooked. And this was only a "play" app with painting. Not even something educational. Renee and I became intrigued. Could it be that our 3-year-old son with Cerebral Palsy and very difficult control over his finger and arm movement could manipulate and control a computer? An iPad?

Yes. It's because Zach's a Mac.

Around this time, our traditional therapists were urging us to get a communication device. OK, what will that take? Well, the one they recommended was PC-based, cost about $10,000, will take you about 6-months to get it, when it comes it's the size of an old 17" vacuum tube-powered television set, and the only capabilities it has is strictly communication device. Sounds like fun, versatile, and easily transportable! Yea!

Somewhere along the lines, maybe it was an internet story or a newsletter or a listserv comment, someone mentioned there was a communication app and they were using it on an iTouch for their older kids to communicate. Research began on my part and I found the app was also available for the iPad. It's called Proloquo2Go. It's website says the app "provides a full-featured communication solution for people who have difficulty speaking. It brings natural sounding text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary of over 7000 items, full expandability and extreme ease of use". The communication app cost about $179 to download; kind of expensive comparatively speaking to other apps, but... let's see...

Lowest model iPad - $500. Communication app - $179. Ability to download multiple apps for educational purposes, interactive books, and learning games. Availability - immediate.

Therapist-recommended PC-based communication device - $10,000. Ability to download viruses. Availability - 6 months+

Hmmm... maybe the iPad wasn't so stupid after all.

Renee and I talked about it and decided it would be a good purchase for Zachary. It wasn't until we actually got to the Apple store to get more information that we were completely sold hook, line and sinker on it.

The store model had a PBS-cartoon based educational game app called "Super Why". Zach loves watching "Super Why"; it's a cartoon about reading, stories, characters, letters, words, and rhyming. Zach started playing with the app and the on-screen character of one of the three little pigs asked Zach to spell a word by finding the letters one at a time. He'd ask, "Let's spell the word KEYS. Find the letter K." Three choices of letters spread across the screen. Zach immediately chose K. Then the pig asked "Find the letter E." Boom. Zach picked E. And onward for 100% accuracy. He continued playing and LOVED it!

Done. Sold. Zach's a Mac.

After having it now for a few weeks, we've managed to download dozens of free educational apps that help Zachary learn and show us he knows what he's learning.

He knows his entire alphabet. He knows all his numbers. He knows his animals, shapes and colors. And now he's starting to mimic the sounds of animals (he'll chose a Bee in one of his animal apps and make the "Buzzzzz" noise. He's never been able to make animal noises before).

We also downloaded the communication app and are working on it with him. It can be complicated and multi-dimensional, but just yesterday, he selected this app and hit "I want" "something" "something to eat" "fruit" ... he then hit every fruit button on there, to which I told him all we had was strawberries in the house. I helped him scroll down to strawberries and had him push it. "Strawberries" it said. I took his hand up to the top to tap it and the device said "I want something to eat, strawberries." I gave him one right away.

While he may have just "accidentally" gotten to this app and hit buttons at random, he's been exploring it lately, checking out all the things the different buttons say. So anytime he does access though, I will listen and do my best to show him he can use it to communicate. It'll be a learning process and he'll need time to poke around and explore all the buttons to know them all. He may not be using it "purposefully" quite yet, but he'll get there. We're working on it with him.

Zach absolutely LOVES his iPad. He knows what it's called; he can navigate through it and select apps, going in and out of them. Just the other night, he was able to turn it on and unlock it all by himself!

For us, anything that will benefit Zach in any way - therapy, educational, health, etc - is what we as parents want for him. We all want the best for our children. He's truly impressed me with his skills at this sleek, cool computer tablet. One of our therapists even recently commented they believe Zachary (although still non-verbal) is at his age-appropriate cognitive level!

Zach's a Mac. And we're proud of that.

We're looking forward to his continued progress developmentally and if the iPad with all it's cool downloadable educational apps can help him in that regard, we are excited to watch.

I do realize there are many negative viewpoints when it comes to getting a child involved with computers at a young age. Well, Zachary's different. He has special needs. He cannot talk, cannot sit on his own, cannot walk, cannot run, cannot play like typical kids. As parents, we work with Zach and play with Zach every day, hands-on, more involved physically than parents of typical children who have the abilities to run around, play, and be part-way independent. Naysayers of the iPad and children can take a walk, because it's useful to Zach, useful to his learning, and useful to his overall development. He can show us how smart he is. He can use it to talk and communicate to us. And that is absolutely invaluable. No critic will ever affect that fact.

Critics are PCs. Zach's a Mac.

Parents' Poem

2010-06-30T13:49:00.000-06:00

My mom sent me this, so I thought I'd re-post here.

Parent's Poem
==============

Mothers, touch your children,
Fathers, hug them tight,
Let them know you love them
morning, noon, and night.

Put your arms around them,
hold them near to you,
Feel the beating of their hearts,
the life that you made new.

Roll around the floor with them,
tease and laugh and play,
Listen to what they'll tell you,
they have so much to say.

Take time to get to know them,
see the colors in their eyes,
Appreciate that person
that deep inside them lies.

Let them run their fingers through your hair
and down your face,
Fill their hearts with words of praise,
make home their favorite place.

Cuddle with them on the couch
and watch a TV show,
Sing with them or share a book
and help their world to grow.

Take a walk into the park,
hold each other's hand,
Smell the flowers, feed the ducks,
build castles in the sand.

Mothers, touch your children,
Fathers, hug them tight,
Show them what a gift they are,
to love them feels so right.

~by Kathie Davis~

Rocky Mountain Vacation

2010-06-23T14:01:00.000-06:00

Last week, my parents came to town and we all headed up to Rocky Mountain National Park in Estes Park, CO for a family vacation. It was a truly wonderful getaway. This fantastic destination is only 1.5 hour drive from our house and we got to spend a week in the mountains, surrounded by nature's beauty.

We got a backpack to take Zachary on hiking trips with us through the park and even in the downtown area of Estes. Overall, it was great to relax ... well, for me relaxing is doing a bunch of stuff - hiking, visiting wineries, riding the tram, walking downtown, driving through the national park, fishing, etc. Doing these kinds of outdoor activities just fills my soul. The sweet pine and dirt smell of the mountain forest; the picture-perfect blue skies across rugged snow-capped mountains; spending time with family.

Special thanks to my parents for coming out and taking us on this trip. It was desperately needed to escape the work life, the hustle and bustle of therapy and doctor appointments.

Here's some pictures from our vacation.

Taken for Granted

2010-06-10T22:02:00.003-06:00

There are times in all of our lives where we realize the things we've come to take for granted.

Possibly it's the first time you actually, and fully move away from your parents and are faced with doing laundry, dishes, paying bills, and having to be an all around responsible adult. You realize you've taken your parents for granted.

Maybe it's Memorial Day, where we reflect and realize that freedom isn't always free and that some gave their entire lives for the country we live in today. And you realize that complaining about your tough boss, just isn't that big of a deal. Or it's the Fourth of July where we may remember how blessed we are as a nation and all those leaders who have gone before us, building the foundation of what we enjoy today. It could be an experience where you volunteer to help the poor and realize how good you truly have it.

Today, I reflect on Renee. She has been on her "girls getaway" for two days now, with another two to go. It's her first complete girls getaway, and I realize I have taken her for granted.

I'm alone with taking care of Zachary and working full time from home. Let it be known, I've had help from Zachary's therapist the first day, then Zachary's nana the second day, but each morning and evening it's only me. And tomorrow, I face a full day of taking care of him while working from home all-day. Same with Saturday, until Renee comes home from her trip and we pick her up from the airport.

And I have no idea how I'll make it and handle it all.

I miss her. I miss her presence around the house. I miss her sweet disposition with Zachary and me. I miss her being home with me. It's strangely silent in the house, even when I have the radio on and Zachary and I are playing together. It's lonely. Zachary knows it too, and shows it in his subtle questioning, looking me in the eye and saying, "Ma-Ma?"

I've kept Zachary fed, entertained and cared-for. But I can't do it like I can with Renee as my teammate. I wonder what tomorrow and Saturday will be like.

Renee does so much that I truly take for granted. She's the helper God has provided for me. And when she's gone, I miss her.

Our visit to D.C. for FDA Advisory Committee re: Acthar Gel

2010-06-01T17:34:00.000-06:00

We did a special "behind-the-scenes" episode for ExceptionalFamilyTV.com about our trip to Washington, D.C. to testify in front of the FDA Advisory Committee about Zachary's experience with Acthar Gel, made by Questcor Pharmaceuticals. Zachary had infantile spasms (seizures) at 7-months-old and this drug (ACTH is the growth hormone used in the drug) stopped Zachary's seizures after six injections. At three-years-old, Zachary has not had another seizure to date. In total, his seizures lasted for only one month. Questcor presented their case to the FDA in order to get their drug FDA-approved. We shared our story about Zachary in the hopes it could help another family. Check out the video:

Pictures from our trip:

Being a child for a little longer...

2010-05-24T19:49:00.001-06:00

Several days ago, I posted a Facebook status update on a thought I've had for the past year. It has to do with Zachary being a child for a longer time because of his developmental delay. It occurred to me one day while cuddling with Zachary on the couch. You see, I love being a parent and I absolutely love Zachary and love these early childhood years. I want to soak them all in as much as I can - cuddle time, naps together, laughing hysterically, rolling around, etc.

Since birth, we always knew he'd be a bit behind developmentally because he was born premature. With the seizures and the CP diagnosis, we knew he'd be delayed even more. At three-years-old, there are many aspects of his personality spot-on with typical three-year-olds. But there's also many parts which could fall in the one-year-old and two-year-old categories.

With Zachary being developmentally delayed, it will take him longer to "grow up", thus we as parents get him in his childhood years for a longer period of time. It's a blessing and one I can now appreciate after the weight of the diagnosis has set.

These early childhood years are some of the best - and I only say that through my limited experience, but having talked with others and analyzing grandparents, I think it's right. Grandparents are so overjoyed to have a little bundle of joy, a little grandchild, and I can only imagine part of the happiness/pride/general "grandparent-ness" comes from getting to enjoy these early childhood years once again - after a couple decades since their own children were little and cuddly.

And so, even the older generations are teaching us this "prime" period of a child's growth is a very special one.

So with all the negatives that may come with a special needs diagnosis or a developmental delay, I grab onto the positive viewpoint. My son will remain cuddly and fall asleep on my chest for a little longer before he grows up. We'll roll around and laugh hysterically more. He'll retain his sweet childhood innocence for a while longer than most. And until he "catches up" to typical kids, we'll have him and enjoy him as a child in this prime time of childhood.

It may be something born out of what some consider tragedy, but it's a blessing I'm thankful for.

To an Exceptional Mother, on her day

2010-05-09T08:54:00.003-06:00

Dear mama,

I asked dada to write a poem for you about how I feel, well at least how daddy sees how I feel, about you, my mama. Happy Mother’s Day!! Love, Zachary

I love the way you dress me up

I love the way you massage my butt

I love that you let me eat

Tasty Pop Tarts, my favorite treat

I love you in the morning time,

I love you when the sun don’t shine.

You, mom, are my place real safe

You help me put my toys in place.

Though I cringe when you comb my hair,

I love that you do truly care.

Even when I cannot explain

You wipe my tears without complain.

You help me work to learn to walk

You help me work to learn to talk.

You sit me down and read me books

You laugh at me when I give you “looks”.

Your love for me is beyond compare

Do other kids’ moms have your flair?

I love the way you teach me the world,

I love it when your hair is curled.

I love to play with your hair so long,

It helps my fingers become so strong.

I love it when you hold me tight

I’m sorry that I sometimes bite.

I love it when songs you sing

I love it when you push my swing.

I love you mama, yes it’s true

Happy Mother’s Day to you!

----

You, Renee, are a true exceptional mother. From the very beginning, you have taken to your roll as mom quicker and better than I’ve seen others. Even though you’ve admitted to me that the first few months were hard bonding times, you latched on nonetheless and took care of your baby boy for every need or want he had.

It’s been three years since I first witnessed the mother in you blossom. You are absolutely incredible. It brings tears to my eyes and a bright smile on my face to see you love on our Zachary.

The way you communicate with him and know exactly what he’s saying or what he wants. The way you play with him and tickle his belly. The way you explain to him what’s going on for the day, in the world, the workings of everyday life (even when you thought it would be impossible for you to do so). The way you let go and let him be a kid even when part of you is saying to do therapy every day all day.

You are the reason Zachary will be so well adjusted and functioning in life. You get him dressed with sweet song and kisses of love. You get him ready for school and ready for therapy. You take care of Zachary beyond measure.

I love seeing you interact with him and know, you just know, his favorite things to eat/do/play/watch, even though he has a difficult time communicating directly with us. Your compassion for him is so incredible, every mom in the world should use it as an example. You are his comfort; his source of security; the warm, soft, open arms he can always go to. With his gentle repetition of “ma-ma”, everyone knows he needs you; needs to know you’re nearby.

You continue to amaze me each and every day as you grow, blossoming more and more, as a mother. It is an honor to me that you are the mother of our child, our exceptional child. You are the positive force of light when things are tough. I appreciate all you do, and know Zachary does wholeheartedly as well.

On this Mother’s Day, we both wish you the best, desire you to know how much we care, love, appreciate, thank you, need, and are blessed to have you in our lives!

Happy Mother’s Day to the best Ma-Ma in the whole wide world!

Exceptional Family TV Preview Reel

2010-04-24T21:32:00.000-06:00

After many long months of working on this project and many long nights reviewing/editing footage, we draw very near to our first episode launch date of April 30 for Exceptional Family TV.

The first episode will be about Jack, a 10-year-old boy with autism who spent the first nine years of his life functionally nonverbal; then, within one year of introducing him to a video camera, his world of understanding and communication completely transformed!

We have a preview reel up right now for all to watch and get an idea of what's coming up. Exceptional Family TV Preview Reel | Exceptional Family TV

Also, check out our cover story in Exceptional Parent magazine this month (April 2010) where I have my first nationally published article about our family's story and the beginnings of Exceptional Family TV.

[Thanks to everyone who continues to check my blog. My sincerest apologies for being out of the blogosphere for so long. Working full time, spending nights & weekends working on Exceptional Family TV, writing monthly articles for Exceptional Parent magazine and still trying desperately to manage being a decent husband and father have really tied me up to blogging lately. I hope to get back in the groove immediately.]

Renee's Blog

2010-02-27T21:37:00.000-07:00

It's been a bit busy for me the last few weeks. Right now I'm editing the Exceptional Family TV episodes from our Denver production block.

I'll hopefully catch up with some blogging, but in the meantime, my awesome wife, Renee, is doing some great blogging of her own at MassagerMommy.

Check it out for some great updates on the family and the Exceptional Family TV project.

Wheeling out of denial

2010-02-07T20:29:00.001-07:00

Denial.

It's something I, as a parent of a child with special needs, wrestle with continually at various stages. It ebbs and flows, coming in and going out like the tide waters of the ocean.

One of my little "denial" factors dealt with getting a wheelchair. Our therapists must have recommended getting a pediatric chair back when Zach was two. We blindly went forward with ordering one too, only to find out it came with a $1500 copay price tag, of which all had to be paid up front in one lump sum.

Ah, thankfully, denial could set in for a little bit longer.

But, it always catches up with you. Truth has a nasty way of slapping you in the face sometimes.

It was my preschool fears, which led me to face my denial once again. Zach is quickly approaching three-years-old and will start a one-day-a-week preschool program through May and then in the fall will attend four-days-a-week. With his current condition and abilities, it was very apparent Zach would need a wheelchair for proper school participation. I was left with the insurance option (which we had no money for) or...?

Well, craigslist of course.

We found a decent wheelchair for a steal of a price. It used to belong to a girl and the base bars were bright purple and the girl's name was stitched on the back. It was also for an older kid, but we got it adjusted for Zachary's height and size by a medical equipment specialist. Renee ripped out the stitching of the girl's name and took some of my camo-duct-tape and wrapped the purple bars to make it more of a "manly" chair.

Zachary took his inaugural ride to church one Sunday, then again when we recently toured a preschool he may soon attend. I became more and more accustomed to the idea of Zachary in a wheelchair and even felt more at ease that he would have this chair when facing those tall, rambunctious and touchy kids in the classroom.

Wheelchair denial... faced and overcome(?) That's still to be fully determined I suppose. As stated above, denial has a funny way of ebbing and flowing, coming and going. One day here, next day gone, only to return again in another area. 'Tis the life of the parent raising a child with special needs.

It's not that I'm opposed to the chair, hate it, or feel animosity against it. It's the denial. I always thought he would just eventually be able to walk. That one miraculous day, he'd be able to stand and fend for himself, even if a bit clumsy.

I was in denial of the fact he would ever NEED a wheelchair.

For this moment, I feel I've "wheeled" out of denial in this area. The alternate option at this point, for Zach to be on the floor at preschool, is definitely not an option for me.

We will continue working with traditional and alternative therapies, always hoping above hope he shall be able to walk/stand by himself one day. Until then, we have the chair to make his life easier for the time being.

And denial will always find a new area in which to harbor.

Don't mess with piano time

2010-01-30T15:15:00.001-07:00

Although I work from home, I'm still working in an office room during the day. So like other families, my time with my son is from the early to late evening time, before bed. This is where we all go to the basement family room, mama relaxes and dada plays and wrestles with Zachary.

I absolutely love this time! Zachary and I do "Supermans" where I put him on my leg and rock on my back shooting him up in the air like Superman. We also do an exercise/tossing game I like to call "Cranks" where I lie on my back, have him stand on my chest, I hold his hands, then tell him to "crank down," which is him doing a leg squat. When he gets to a low enough squat position I push him up fast and toss him in the air then catch him. Zach immediately roars in laughter. I call this an "exercise" because it gets Zach to go from standing to squatting in a fun way. I'll also hug Zach close to me and we'll roll around on the floor together. It's just great daddy/son time.

But sometimes, Zachary just wants to jam on his piano, and there's no messing with Zachary's piano time! It's a passion of his. Hitting the buttons, rolling his hand down the keys, just jamming away to the music. He does it all with purpose too.

And though I love when he engages in an activity, especially one like music where we see a true passion within him, it also breaks my heart because during these moments, he'd rather have piano time than dada time.

So I let him roll to his stomach, army crawl over to the piano and start manipulating the sounds. He'll get so excited by the tones, he will draw his knees up to his chest and actually get into "four-point crawl" position for a few seconds at a time.

What's amazing is watching him "compose." This piano has a variety of key-sound choices: violin, guitar, organ, etc. Zach will hit these selection buttons until he hears the tone he wants, then will play the keys. But if another sound choice is selected (mostly by mama or dad testing our theory), he immediately stops playing and will hit the selection buttons until he hears that same tone again. Then he continues playing.

He does the same thing with song-selections on the piano and will make sure to find the "one song" he wants and play it over and over while "dancing" on the floor on his back - kicking his legs and crossing his arms while smiling huge.

It's his passion. And I love watching him enjoy it. (Yet, it can be downright sad - and maybe even disappointing - when piano time cuts into dada time... but alas, it's something as a father I'm going to have to get used to as he grows up, right?)

An amazing wonder of mine is how many of our differently-abled children are drawn to music. It must be soothing, comforting and engage a section of their brains unlocking a wave of enjoyable activity.

If Zach was a puppy

2010-01-16T17:41:00.001-07:00

If Zach was a puppy, I swear we could drop him off in the middle of town and he would find his way home, just like those amazing stories of dogs who were lost and "miraculously" found their way home. (Not that I'd ever even test that with Zach or with my dog). I say "a puppy" mostly because it is what Zach's Conductive Education teacher calls him when Zach bites her arm when he gets mad about walking.

Ever since he was old enough to ride front-facing, Zach just LOVES watching out the window. Every errand mama runs or trip dada takes him on, he is locked on watching everything outside the window. Trees, buildings, turns, landmarks, taking in and absorbing everything. I believe he has the town memorized!

He always gets excited when it's time to go bye-bye. He'll stiffen up, throw on a huge smile and say "buh-bye, bye-bye, BYYYYYEEEEEEE!" over and over.

We load him up in the car and away we go on an errand, to visit a friend, to church, to nana and papa's... wherever.

Then when we head back home, especially if it's a long time away, he'll get super excited when we turn on to the main street that leads us home. He'll smile, get stiff and yell "YAAAAAAHHHHH!"

But, in some instances, we may have to pass that main road leading home to go to another destination. Immediately when the car's rear tires pass the "no turning back" point of the street, he gets mad, upset and whines. "Eeehh, eh, eh, eeeh!"

He becomes a "Whiny-Whinesters"... well that's what we call it.

This will continue unless we specifically tell him, "Zach, we're not going home just yet. We have to go to one more place, then we'll go home."

Then he's calm. When it's time to head back home, he's excited once again when we turn on the "right" street (according to him).

It just amazes me how much he knows, is aware of and memorizes! It's amazing how as parents of a kiddo with special needs we are so in-tune with their own particular style of communication and how we know what they are thinking or "communicating" even when they're not forming specific words and sentences. There's more going on in those brains than we realize sometimes.

Two boys receive adult stem cell treatment

2010-01-05T13:23:00.000-07:00

This is a local news story from Denver on two 10-year-old boys who went to Germany and received the same adult stem cell treatment from the same facility we are trying to get Zachary to.

Absolutely nothing

2010-01-05T09:50:00.000-07:00

I'm both blessed and cursed with a "type A" personality. There's no such thing as "down time"; there's always something needing to be worked on, needing to get done. Busy, busy, busy.

My wonderful wife had the ability to balance me out and make sure I don't take this type of innate drive to unhealthy levels. For that, I am grateful.

Renee has taught me how to relax, veg out and just do nothing from time to time. And she's taught me not to feel guilty about it.

From January 1-3, our whole family relaxed and did ... nothing.

No cleaning, putting away the decorations nor organizing.

No therapies, no work, no projects.

And it was most excellent.

Three days of resting and doing absolutely nothing. It was rejuvenating.

It's great to take a day off and do nothing. And this is no new discovery. God commanded it of us to rest because in the busy lives of humans, we need a day to rest and to honor Him. As Jesus said in Mark 2:27, "And he said unto them, 'The sabbath was made for man, and not man for the sabbath'".

I am definitely one to admit, ashamedly, I have not taken a regular "day off", a sabbath, to relax with my family, and honor God. But it is something I realize I need to do; I have to do. The constant bombardment of work, work, work; get things done; check off the list; so much to do - it gets draining and tiring and wears on the soul. Especially when you have a personality that cares and worries about this kind of stuff.

It's back to the work schedule again. Three days off of doing nothing is quite a bit. I'm reminded by God and by my wife, I should not get all caught up in constant work. We need a regular day (or three) to do absolutely nothing. I also need to honor Him in those days of rest.

Charlan Christmas Chronicle - Colorado Edition

2009-12-22T16:52:00.003-07:00

Times are rough, cash is short
"Carbon emissions" are a global wart.
With Christmastime so serene
And to save and be a bit more green
We send along our Christmas card
With hopes it finds you in good regard.
Please don't think us rude and pout
We just chose the digital route
To send you all our Christmas cheer
And wish you all a Happy New Year!
-by Nathan-

I'm Scared of Preschool

2009-12-13T07:29:00.000-07:00

Strangers. Weird teachers. Classmates.

No one familiar. Nothing recognizable.

Handfuls of little 3-year-olds running around. Talking, talking, talking. Saying what they want, what they need, what they think. Asking question after question. Touching everything. Sitting on chairs at a table.

The crayons and paintbrushes to be manipulated by tiny little hands.

Snack time. Nap time. Sing-along songs with all the kids joining the chorus.

It’s a nightmare. All of it. Every little detail.

I’m scared of preschool.

Not that I’m going back to it. Though, God knows I would love to go back to the childhood innocence of the preschool-age without the responsibilities, bills, politics and world events to stress over.

No, not me in preschool. I’m scared for Zach.

As we close out 2009, Zachary’s third birthday is right around the corner in the first week of March. And he starts preschool.

Granted it’s a “pre” preschool program, it’s still going to be a school environment. It’s us leaving him there … helpless.

You see, Zachary still can’t sit, stand, walk/run, talk. How is he going to get by in preschool?

Mom nor Dad will be there to interpret his personal sign language. How will the teacher know his sign for “juice” or “more”? And even if the teacher knows Zach’s signs, will they take enough care to help him? Or will they be too preoccupied with all the typical little kids running around? Will he have a one-on-one aide? Will he get the assistance he needs and will they have the patience with him? What will it be like for him in that environment? What will he be thinking?

Will the other kids be constantly asking, “What’s wrong with him?” Will the other kids shy away from him because he’s different and through watching their parents’ actions they learned to reject anything different? Will the three-year-olds have the ability to tease and make fun? Will they establish their tiny little pecking order and peck Zach out?

We’re not going to be there to explain to each and every little rascal about Zach, every time the question comes up. We will have no ability to stop any teasing when we’re not there. We can’t tell him to sit up straight when he starts leaning to his weaker left-side; or to help him hold a crayon and put pressure to paper when it’s time for coloring.

I’m scared of preschool.

Renee and I love focusing and reporting on the positive progress Zach is making because it is all true and we are very proud of him. Yet the other side to that truth is the “can’ts” that haunt his preschool resume, if we were to look at it with blunt, harsh honesty. And that makes me scared.

For parents of typical kids, preschool is frightening for the child because it’s a new environment, new people, new faces, new schedules. I’d imagine (but won’t say definitively) that those parents are excited for their little ones to attend preschool, even if the child has initial, understandable hesitations and worries. The thing is, these worries can be communicated between typical child and parent. The typical 3-year-old can speak their thoughts in sentences and communicate what they want, need or how they feel.

Zach can’t. Well not the way a typical child does at least. Zach says “mama, dada, nana, papa, all done”, clearly and with purpose. He’s just starting to use a communication device, but communication needs to be prompted with Zach, it’s not always done from his own initiative.

Zach rolls on the floor and can army crawl. Imagine yourself laying on your back on the floor or on your stomach and imagine 15 people standing around you, walking around, running, playing, etc. Imagine not being able to say, “Hey, please don’t step right next to my face!” or “I really don’t like you running and jumping over me while I’m laying here.” Imagine you can only grunt, yell, scream or cry. And now imagine that form of communication irritating other kiddos and irritating a teacher.

I’m scared of preschool.

I have no answers or solutions for my fear. This frustrates me, especially as a father who always wants to find the “fix-it” solution to problems in life. I got nothing. And that too is scary and it hurts. The only thing I can do is move forward, as we always do. Take Zach into my arms and talk to him about preschool and let him hear my voice and hope he understands. We’ll make sure to thoroughly shop for the right preschool program and do what we can to ensure his needs are met. We may have to get him a wheelchair (that’s a whole other blog post) for his school setting.

And so we march on into a new era of Zach’s life, going from two to three-years-old. He’s an awesome little trooper with a heart full of joy. He’ll reach this milestone without knowing all the legal ramifications the age of 3 brings with it for a child with special needs (for those that don’t know, 3 marks a switch with early intervention services provided through the I.D.E.A. law. In order to receive services such as physical/occupational/speech therapy he needs to be enrolled in school). Heck, he may get excited about going to preschool and have a blast with the kids there.

But for now, I’m still scared of preschool.

Music Video on being a parent with special needs

2009-11-21T14:40:00.004-07:00

This YouTube video was shared on the Parent to Parent Listserv in Colorado. Had to share - made me tear up. It sure hits home.

Zach Fights Back Website Launch

2009-11-10T15:07:00.000-07:00

We are proud to announce the launching of a specific website for Zachary!!

www.ZachFightsBack.com

It includes his full story, fundraiser event notifications, information on Cerebral Palsy, videos, links to his Twitter feed, Facebook page, and PayPal for donations

We will be constantly updating that site with information, photos, and more. This blog, Nate Dog's Blog, will still be in effect for regular blog postings. ZachFightsBack is just a specific site dedicated to our son and efforts to help him through various therapies.

The website's launch is featuring our current "viral" fundraising campaign to get 1,000 people to donate $25 to the Zachary Charlan Benefit for Stem Cell Therapy in Germany.

My good friend, Scott Denney, created this amazing site for us and did the web design and the graphics. Our heartfelt gratitude and appreciation go out to him. He is an incredible visionary who has superb digital creativity. It is an honor to know and work with him. His company is called Swagger Vision. Check him out and please utilize his skills for any large, medium or small project you might have.

Had to share...

2009-11-06T08:00:00.013-07:00

I had to share this message I received through our YouTube channel. Zachary's videos have been used previously for educational purposes, and now they are recently being used as a personal CP-reality connection point for nursing students. It truly amazes me how Zachary is having a truly positive effect in so many places!

I found your videos last year as I prepared a lesson for my 2nd year nursing students at ... Community College ... I found the videos to be just what my students needed to see to make growth and development and CP real to them. Many of them laughed with your family and cried as well... I was overjoyed to find new updates to the Zach life story as I prepared for this year's class presentation. He is doing so well. I have also shared your story and videos with a friend who has a child with brain injury after suffering hypoxia at birth. It is my hope they can find peace and God's strength's in their situation as you have in your situation. Thank you so much for sharing your story with the world. May God bless your family as you continue your journey.

Annadee Wright Photography

2009-11-05T15:14:00.000-07:00

For all those who have commented or complimented the new family picture on the top of the blog, thank you very much. I want to let everyone know that the talented photographer is Annadee Wright, a dear friend of ours. We've known her and her husband, Nate, for a few years through a church small group.

Annadee recently found her talent of photography and is diving in full force. Her website is http://annadeewrightphotography.blogspot.com/ and she is in the Boulder/Denver area for anyone who wants family photos or other photography coverage of their special event.

You can see a few selections from our photo shoot here.

My personal favorite is this one:

Zachary's Zombie Party!

2009-11-02T10:13:00.002-07:00

The party was great and we appreciate wholeheartedly everyone who came and/or supported in any way. Special THANKS goes to Tracy and Kim Eastman who hosted the event at their home. We had a good showing of people, prizes were raffled off, and folks enjoyed fighting some zombies on Wii's "Dead Rising" and "House of the Dead" games. The winner of the costume contest went to Teresa who dressed as Alice, the zombie killer heroine from "Resident Evil".

Growth Spurt in Development & Conductive Education

2009-10-14T12:07:00.001-06:00

Zachary has been improving by leaps and bounds once again! It's really an exciting time in his own personal development milestones. Zachary has a lot of books. Some are from gifts and some are from when I was a kid. We recently "discovered" (it had just been hiding for a few months) a picture/word book with an electronic side key to press the corresponding button and hear the word. After going over it with Zach maybe twice, he now knows the thing front and back!

We ask him to point out the "car" and he points it out on the page then immediately goes to the right and presses the car button to hear the word! Yes I'm a proud dad and to me this is a momentous moment for Zachary's development, no matter how silly it may sound. We have worked with him on vocabulary before, but nothing seemed to "click" unless it was words that had to do with food. But now he's learning quickly, in front of our eyes and it's sticking. He's showing his intelligence and it makes us so excited!

For the last month, we've had him enrolled in Conductive Education. This is an intensive therapy program out of Hungary that special needs teaches kids, mostly with cerebral palsy, how to live an independent life through gross and fine motor skills as well as speech/vocabulary/communication. It's an amazing program and we're very blessed to have one located about an hour away. Since he's started CE, it seems he's had an amazing spurt in cognitive recognition, attention span and learning as well as physical achievements! It was after he started CE that we had the breakthrough with the vocabulary recognition on the electronic book.

He attends Conductive Education once a week for 5.5 hours. The first week he screamed and cried the entire time. The next week his crying was reduced by half. The third week was reduced by half again. He's getting more and more used to it, but it definitely pushes him to his limits and forces him to really put forth effort physically.What is truly great about the program is it is completely different from what he's been doing in traditional therapy for two years. He's breaking out of his "comfort zone" and being pushed beyond.

Although it's heartbreaking to watch our precious son go through this as he screams and cries, we know it's all for the better in the long run as he is pushed to his limits to achieve and overcome his physical obstacles. It's a very integrated program involving both physical and occupational therapy along with preschool learning/education and speech/communication and vocabulary building.

I was updating a good friend of mine about Zachary's new therapy school and the struggles he was experiencing being pushed to his physical (and mental) limits. My friend recited an inspirational story to give me encouragement while watching Zachary's struggles. It's a story that you've probably heard before, but I re-post it here, in full, as found all over the internet:

Once a little boy was playing outdoors and found a fascinating caterpillar. He carefully picked it up and took it home to show his mother. He asked his mother if he could keep it, and she said he could if he would take good care of it.

The little boy got a large jar from his mother and put plants to eat, and a stick to climb on, in the jar. Every day he watched the caterpillar and brought it new plants to eat. One day the caterpillar climbed up the stick and started acting strangely.

The boy worriedly called his mother who came and understood that the caterpillar was creating a cocoon. The mother explained to the boy how the caterpillar was going to go through a metamorphosis and become a butterfly.

The little boy was thrilled to hear about the changes his caterpillar would go through. He watched every day, waiting for the butterfly to emerge. One day it happened, a small hole appeared in the cocoon and the butterfly started to struggle to come out. At first the boy was excited, but soon he became concerned. The butterfly was struggling so hard to get out! It looked like it couldn’t break free! It looked desperate! It looked like it was making no progress!

The boy was so concerned he decided to help. He got scissors and snipped the cocoon to make the hole bigger and the butterfly quickly emerged! As the butterfly came out the boy was surprised. It had a swollen body and small, shriveled wings.

He continued to watch the butterfly expecting that, at any moment, the wings would dry out, enlarge and expand to support the swollen body. He knew that in time the body would shrink and the butterfly’s wings would expand.

But neither happened!

The butterfly spent the rest of its life crawling around with a swollen body and shriveled wings.

It never was able to fly…

As the boy tried to figure out what had gone wrong his mother took him to talk to a scientist from a local college. He learned that the butterfly was SUPPOSED to struggle. In fact, the butterfly’s struggle to push its way through the tiny opening of the cocoon pushes the fluid out of its body and into its wings. Without the struggle, the butterfly would never, ever fly. The boy’s good intentions hurt the butterfly.

Sometimes struggles are exactly what we need in our life. We would not be as strong as we could have been without them. We would never be able to "fly". If God allowed us to go through our life without any obstacles, it would cripple us. As you go through life, keep in mind that struggling is an important part of any growth experience. In fact, it is the struggle that causes you to develop your ability to "fly."

Zachary's Zombie Party

2009-10-14T11:55:00.000-06:00

Zachary's new swing set

2009-09-21T13:09:00.000-06:00

It took a while, but I finally got Zachary's swing set all assembled and ready for action in the backyard. Zachary's Nanna Jo and Papa Len ordered him the swing set for his birthday. Then it took a while for delivery. Then it rained every weekend in the summer. Then I was traveling. But September was a month when I didn't have to travel, so with the help of PaPa Greg, we got it all assembled in a grand total of 8 hours.

Zachary absolutely LOVES it. He was super excited to be swinging and loved going down the slide. I'm also looking forward to working with him on strength and mobility by helping him climb the ladder on the side (it has "rock wall" attachments to help with gripping).

Here's hoping for some great fall weather...

Zachary learns more sign language

2009-09-10T10:33:00.000-06:00

It's difficult for Zachary to do the "traditional" baby or ASL sign language because of his spastic hands and arms. So we try to teach him certain signs to do "his own way". Renee taught him "please" and "juice" in just a few minutes and he picked up on it fast.

He's known how to do "more" for a while. Zach's sign for "more" is his fist moving up and down. Renee taught him "please" with his hand opened and put to his stomach. "Juice" is his hand opened and put towards his mouth. While he's learning the signs proper usage, we prompt him for them and he delivers, which is a great breakthrough in communication. It's been more than a week now and he's telling us what he wants with his signs without us prompting him.

Boulder Men's Christian Breakfast

2009-08-07T08:55:00.005-06:00

A close friend of mine invited me to be a speaker at the Boulder Men's Christian Breakfast. It's a big group of gentleman who have been meeting together every Friday morning for the last 27 years. Each week, after food, fellowship and worship, they have a different speaker talk about their ministry and God's work in their life.

My friend, knowing our family's story, all we've been through and how much God has worked in our life suggested to the organizer to have me talk one week. And today, August 7th was it.

Even though I knew the content and knew it well, I was still a bit nervous and wanted to be as "prepared" as possible. I put down bullet point notes and excerpts from previous blog posts so I could craft how I would tell our story in a comprehensive, detailed and emotional manner that was honoring to God. It was important to be able to express the trials and tribulations to my faith, how I overcame and what I learned from God's will, from His chosen path for my life.

I picked up my friend and we went to the Baptist church where the group is held every week. The atmosphere was friendly, warm and welcoming so I immediately felt comfortable. I prayed for God's strength to work His message through me and to be able to speak with nerves. He came through.

I had a full half hour and took up every minute of it. It all came from the heart and I only referenced my notes to read quotes from other people on how Zachary has affected their lives - from YouTube comments, to Blog Comments, to Emails, and independent messages.

God worked through it all and from the feedback I received afterward, it inspired those attending.

Once I came to acceptance of Zachary's condition and the different path God had in store for us, I was determined to do what I could in outreach through YouTube, this Blog and other outlets. This public speaking engagement was my first, focused solely on our story and God's work in our life. Even though I had nerves, I hope for more opportunities to come. I praise God that He opened this first opportunity and for all the work He has done in our life.

Our Florida Family Vacation

2009-07-24T10:00:00.001-06:00

I had to travel to Florida to attend a fishing convention for work, so I made it into a longer family/working trip. We stayed with my cousin south of Tampa for a couple of days, then went to Orlando (for my work portion) and stayed at the Wyndam Resort, then headed back down to the Tampa area. Most of the trip was spent in the pool, but we did get to go to the beach one day.

Zachary had an absolute blast in the ocean. He loved the waves splashing up against him. You'll see his excitement in the pictures.

Since he already has a love for water, the pools down there were warm and heavenly for him. He's started to kick his feet while being supported in a stomach-down position and he even moves his arms in a swimming motion every now and then. It was hard to get him out of the pool when it was time to go inside - he did not want to say "bye-bye" to the water. We're still trying to teach him the concept of closing his mouth for dunking. He seems more interested in tasting the water than protecting his lungs at the moment.

Here's some pictures to tell the tale. I post them here because the last thing I want to do is establish another web account with Picaso or PhotoFish or whatever they are.

A Video Update

2009-07-23T16:49:00.002-06:00

So I'm doing a quick cop-out. It's so hard to juggle all the digital spaces - blog, facebook, twitter, youtube, tangle, email, etc. I rotate my attention between them and I need to get a new posting up here. So I'm copping out by mentioning the new videos I have posted of Zachary on YouTube. There are three new ones, with one or more to come later. You can link from my YouTube bar on the below right side of the blog, or simply follow these links:

Zachary Talks
Zachary Shows Where Things Are
Zachary Discovers His Echo

Zachary's first rejection

2009-06-11T22:07:00.002-06:00

I knew when we received Zachary's diagnosis we would be in for a lifetime of rejection. Being different, being disabled, being out of the ordinary always carries with it various levels of rejection, whether it be through friends, family, schools, sports, buildings or companies.

Zachary recently received his first rejection. Of course, the letter came to me, and Zachary, thank God, is still too young to have to explain anything about it.

A previous life insurance policy on myself lapsed and so I applied for a new line through the company I have other insurance products through - State Farm. I've been with my agent for six years and when I approached her about it, she came over and we went through the paperwork. One of the things I wasn't even aware of was having a child as a "rider" on the policy. Simple enough, the child is just included or attached on the parent's policy and if something happened to the child, they would be covered for $10,000. A relative small amount - enough for funeral costs and what not. A simple child rider...sure, I said, and we went further through the paperwork.

A couple of weeks later, I received this letter in the mail.

I read it a couple of times when I first received it, kind of dazed at the pettiness of it. I was willing to pay a pretty decent premium on my policy with Zachary as a rider, and they rejected him based on his cerebral palsy. It was a simple, lowly $10,000 of coverage. Their candor was admired though - they definitely did not dance around the subject or use another excuse. It was straight and honest.

What to do next? Do I go through and remove Zachary as a rider and continue with my policy?

One of the other decisions I made after receiving his diagnosis was the promise to not be friends with, associate with or do business with anyone who would reject Zachary based simply on his disability. So I let the rubber meet the road.

I called up my agent and explained clearly to her I would not be following through with the policy. She had not known about Zachary's rejection, so I explained it, read the letter on the phone, and simply stated my above family promise. As a logical person, I explained to her I did not take this personally and understood completely that it is just a very large corporation with a set of stated guidelines on who and who not to give insurance to - detailed facts be damned.

I further explained to our agent the fact that Zachary is healthy, has the potential to live a normal lifespan, is cognitively great (according to us, family and all therapists) and is at no risk of suddenly dying from his cerebral palsy. While I was disappointed by the result from State Farm's robotic analysis, I understood the big corporation approach. So I ended the call by stating as of now (though Obama's plans are to the contrary, but I digress...), it is still a free country with free market choices and I would be in the market looking for a new insurance company who would accept Zachary for coverage and would subsequently move all my insurance products over to that company.

She didn't know what to say, apologized, and that was the end.

Now begins the search for the new company.

Farmers was the first option and things seemed to be going well with them. Farmers honestly stated they would reject Zachary, too, on a life insurance rider, but they have a policy which allows for an internal broker to find a company that will say "yes" if Farmers says "no". They were able to find an outside company, Protective Life, which has an A-rating and will accept any child as a rider, no questions asked, up to $20,000. Protective Life would also allow the child, once 25 years of age, to take on the policy individually and multiply the coverage up to five times. However, Farmers was unable to effectively match or beat the rates of my other policies, so the search continues. Though I will keep Protective Life in mind.

While talking with the Farmers broker, I probed the "extreme future" question, to gage what life will be like for Zachary. I told her I'm a conservative, I'm going to raise him to be independent and take care of himself and I believe he will be cognitively fine. Yes, he will have some physical disabilities, but I have no doubt he can grow up, get married and have a family of his own and be the provider for the family. Once having the family of his own, would he be able to get life insurance for himself? Her answer - NO.

So this is just a peak into the further struggles Zachary will face in the real world when he goes off as an adult. He won't even be able to get a life insurance policy to cover his family. The rejection continues.

Rather than seethe at the way the cards are stacked against him and us, I'll be taking a proactive approach. This has spurred me to be much better with my finances; to be goal-oriented on paying off all our debt as quickly as possible; to work hard to establish a bright future for him; to assist him in overcoming the rejections of the world and to find solutions through the problems.

This is just the first of many rejections to come. Luckily, this one did not have much emotional value attached to it. Oh do I dread the day(s) when the more emotional rejections will come - the name calling, the dismissal of value, the loneliness, the ignorant, the plain and downright mean and evil.

No, this is just the first. And while it's only silly insurance, it still hurts for the reminder of things to come.

"The Arc Is" - Summit of Hope 2009 Video for The Arc of Jefferson County

2009-05-21T19:56:00.003-06:00

This is a video I did for the Arc of Jefferson County. They are a local chapter of a nationwide organization (a lot of support dollars come from Arc Thrift Store) serving children and adults with cognitive, intellectual and developmental disabilities and their families by providing individual advocacy and training. Every year, the Jefferson County chapter (the county I live in) holds a banquet fundraiser called the Summit of Hope.

They always have a video created beforehand to play during the middle of the banquet. It features different stories of families, what they go through, and how the Arc has helped them. This year, I volunteered my producing, directing and editing skills towards the project. My friend Dirk, did the camera work. This is the finished product. Hope you enjoy.

http://www.youtube.com/watch?v=2YvCmj7VUX4

*I tried embedding it, but the video format is larger than this blog frame so 1/3 is cut off, so visit the YouTube page instead.*

Fighting the Abortionist Culture

2009-05-20T10:20:00.002-06:00

This article from the Washington Times was posted in a parent-to-parent listserv I belong to. It is great to know there are people forming groups/ministries to counter the "throw away baby" disease permeating our current culture.

It is good to know there are still people with morals, values and a deep love for God out there.

Zachary's first Adam's Camp adventure - Early Start Program

2009-04-21T16:53:00.001-06:00

Colorado has an intensive therapy camp organization called Adam's Camp. They have a different age group camps - the older kids get to go up to the mountains for a week (parents too) for a real camp adventure. The younger kids, Zach's age, go to a 5-day, 3-hour a day therapy session at a Denver-metro location called "Early Start".

A description about the organization from their website:

Adam’s Camp is a Colorado-based nonprofit organization created to provide a variety of intensive, personalized and integrated therapeutic programs for children with special needs and their families as well as recreational programs for youth and young adults with moderate developmental disabilities.

Based in Denver, Colorado, Adam’s Camp offers a variety of programs for kids with special needs from infants through young adults. The Intensive Therapy Programs and Transition Program provide team based, interdisciplinary treatment. Small groups of pediatric therapists work one-on-one with 5 children over 5 consecutive days. They focus on each child’s needs and assets, providing coordinated, outcome based treatment.

Families are a big part of all therapy programs. Adam’s Camp offers families the support they need to understand, treat, advocate for and enjoy their child and his siblings.

Once we heard about this program from a resource fair put on by the Arc of Jefferson County, we signed Zachary up immediately. For a week in March, Zachary went through this intensive therapy camp going through a variety of different therapies - Physical, Occupational, Music, Speech and Group Playtime.

It was exciting to see Zachary thrive in this new situation. We were a bit concerned before because he didn't seem too interested in being social with kids - just adults. But he really "connected" as two-year-olds can with the kids at the camp. We got rave reviews from all the different therapists about Zach's personality, ability and intelligence. It put me to tears to hear all the therapists tell us how incredibly smart he is, how determined and how much tenacity he has to overcome his obstacles.

These are things we as parents knew in our heart, but it's so amazing to hear them confirmed from credible third party professionals.

The camp was terrific and I would definitely recommend it to anyone in the Colorado area. There were families from the CO-NM border and from Iowa who came for this particular camp.

At the end of the camp, the therapists present us with a book on Zachary. It has pictures and reviews of Zachary on all sorts of levels.

I scanned in all the pages and posted them here - yes, proud parent bragging away. But in situations like ours, it's joyous to have something to brag about every now and then.

Four-Alarm Surprise

2009-04-17T10:17:00.000-06:00

It takes me way too long to sit down and write, I know. Anyway, back in late February, we were given a HUGE surprise that completely blew us away. The chiropractic office where we get Zach's HBOT treatments told us they needed to contact Renee's parents to clue them in on details for a surprise for us.

It was scheduled for Feb. 21. So, when that day come around, we were led out to east Denver where the Fire Department has their training facility. We went up to a classroom where other families with special needs kids were gathered. There were two big firetruck wagons in the front of the classroom. I started thinking this was a special class to teach kids about fire safety in unique circumstances (with disabled kids) and Zach would get a chance to ride around in the wagon.

The organizer, Tony, gathered everyone together and started talking. Tony explained how a year ago he was talking with a firefighter co-worker of his who had a son with CP. Tony asked if there was anything the fire department could do to help out; how was he doing; how was the family, etc. The co-worker responded they were all doing well and handling the situation, but the thing that really killed him was his son would never be able to ride a firetruck. Tony responded, "we'll change that."

So Tony and a few other firefighters custom built their co-worker's son a firetruck wagon. The child loved it so much, they decided to do this every year for a special kid. Tony takes his son to the same chiropractor we do for HBOT. He had seen Zachary several times and secretly chose Zachary to be the next one to build a wagon for.

And here they were presenting it to us! Renee and I had tears in our eyes, it was such a tremendous and wonderful surprise. Such outpouring of care and love from relative strangers! The wagon is absolutely amazing! It has real working lights, a bell, a ladder on the side. The front grill has his name cut out of the metal, and his name is emblazoned on the dashboard inside. The wagon is also upholstered inside, has cup holders and a pull switch to turn on the lights.

Zach's going to be crusin in style!

After the presentation, they had a whole list of activities planned for the training facility - drive a video-game firetruck, go into a smoky training house to find a baby doll, and get to go up 100 feet in the air in the firetruck bucket.

Massaging and Stretching Zachary

2009-04-03T23:53:00.003-06:00

A YouTube viewer had asked us to post a video about massaging and stretching Zachary. Renee takes care of this usually after his bath time and the entire session can last for 20-30 minutes. It's a long process. I video'ed her and prompted her to discuss what she was doing. She's a massage therapist by trade, and a darn good one too, so Zachary is blessed to have such a skilled mommy.

For any other parents with children with CP, especially with hypertonic muscles, we hope this can help give you some tips or guidance in stretching and massaging your children. This is very therapeutic and will help their muscles, movement and range of motion. Also, if there are any questions, I'm sure Renee would be more than happy to explain anything in more detail by email response or comment response.

Zachary on Film

2009-03-14T22:25:00.006-06:00

My brother in law, Gary, is in Film School. He had to create a 16mm film project for his application into the Bachelors of Fine Arts program. He chose Zachary as his subject and this is the edited film of Zachary and his walker.

I'm copying Gary's "Disclaimer" that he put on his YouTube channel. Although he says it's diminished, we all think it looks great and especially love the part towards the end where Zachary smiles.

*Disclaimer* The film to video transfer has severely diminished the quality of the video. The colors are desaturated and the lighting seems to have been brought down. This is not my fault. Seriously, you should see the film. Anyone got a 16mm projector? *Disclaimer*

The film was shot with a Bolex 16mm camera on Kodak 500T film stock. This is more experimental than narrative, since that is what the film program at UCB focuses on.

Pictures in February

2009-02-16T15:01:00.002-07:00

Momma and Zach.

Watch out! Zachary's driving.

Sitting up and playing with cars.

Cool hat Zach.

You so funny.

Can you love them more?

2009-01-28T17:15:00.001-07:00

Since doing the mild Hyperbaric Chamber Treatments, Zachary has really increased in verbal babbling and has been able to pronounce a few words like dada, gimpa, papa, done. We decided a long time ago it was definitely time to get him into yet another therapy - speech. All our outpatient therapies are with the same location, so we decided to get in their line for a full speech-therapy-evaluation.

This location's speech therapy department is so flooded there's a long waitlist just to get therapy services, let alone the initial evaluation. So we were surprised and excited when a cancellation came up and we were next in line.

We went into the appointment with a great positive attitude and were really happy because we knew if we just laid him on the floor, he would begin babbling for her and she would be impressed with his verbal skills. She began the evaluation and conducted her "tests". She would ask him to point at the right picture in a book, shake little objects out of a bottle and other weird stuff. Zach even played on the floor and babbled his little head off.

Then at the end of the evaluation, she decides to tell us her prognosis for Zach. "He's not going to be able to talk for the majority of his communication and will need augmentative speech devices to communicate."

Not going to talk?

Augmentative speech devices?

Did you hear him babbling? You're saying this to a parent on their FIRST speech evaluation. Like I'm supposed to know what the heck augmentative speech device means. All I can think of is Stephen Hawking's voice computer. And how in the world can you just say he's not going to talk - he's NOT EVEN TWO YEARS OLD for crying out loud!

However, at the time I was more flabbergasted and stunned than anything. I asked if she was looking too much at his diagnosis and not at him specifically. She replied that the diagnosis has much to do with it, but she wasn't very helpful or seemed very positive about him talking. She approved him to get therapy services and put us on a three-month waiting list. Yea.

Renee and I sank into depression by this hard blow that came out of nowhere. Renee held it together more than I that day. I was a wreck - popped a xanax and was checked-out. It was too much for me to handle at the time. All the positive build-up we've had over the last several months, all the progression and development, all the great achievements, and then BOOM - the air's knocked out of your chest cavity and the clouds of doom & gloom swirl overhead.

Given a day or so to sort it all out after the evaluation, we both decided the prognosis was absolutely ludicrous. We were not going to accept it and just like anything else with Zachary we are going to be extremely proactive and he will speak. I'm in the process of finalizing a decision on a freelance speech therapist to start working with him from home right away.

All that to say, I think I found myself loving Zachary more. It was just a feeling at first, but I started thinking there were changes in the way I spoke to him and the way I handled him. It seemed as if I was “loving him more” – being sweeter, spending more time, concentrating on his needs or wants more. I knew the prognosis was not going to be correct and I knew Zachary has the capabilities and determination to exceed anyone’s expectations. And I especially knew no one loved our little bugger more than Renee and I.

As time goes by, you get back into the normal routines and grooves of life and sometimes these “special” heightened feelings go back to normal levels. But for a time, I felt like I did love him more than I already did.

So, back to the title of this post… Can you love them more?

More to come...

2009-01-20T13:18:00.002-07:00

I just got back from a whirlwind of business dealings for my job and have a ton of work to do. I do have ideas for some great posts especially with what's happened to us recently.

We were told by a speech evaluation person that Zach wouldn't be able to talk for his major form of communication.

We're looking into stem cell therapy and have a call with one institute in Australia today.

I'm thinking about a series of products to market based on Zachary's life and our story.

Zach's PT and OT costs from Children's are getting higher and higher each month since our insurance will not "cut off" at a out-of-pocket max when it comes to therapies.

And we've come to the realization that within the next year or two, we have to find a ranch-style house as the one we're in is NOT practical for Zach either in a walker or wheelchair.

So in time, when writing is more pleasure than business, I will elaborate on these points.

A father's Christmas present

2008-12-29T21:11:00.008-07:00

Ever since we started the Hyperbaric Chamber Treatments, Zach has exploded in his verbal. Mostly its just babbling and experimenting with sounds - gobbildy gook if you will. But every once in a while, Zach will get out a purposeful word.

On one momentous occasion (un-videotaped of course), I was giving Zach his nighttime milk and with about a quarter left to go, he pushed back and said, "Done." I was shocked! Had he really said it? I decided to investigate and tried to give him more and he promptly tightened his lips and arched back with a disgusted look. He was DONE. And he said, "Done"!!! Praise God, it was amazing!

Earlier in the month, I was on a business trip and Renee used her cell phone video camera to capture a moment meant to melt a faraway father's heart. It was an early Christmas gift - one of the BEST ones.

Here it is.

(We will also be posting-as soon as I find the DV tape-a good clip of Zach babbling away. Renee and I truly believe this is a direct result of the Hyperbaric Chamber, for what it's worth).

MERRY CHRISTMAS!

2008-12-25T19:57:00.003-07:00

From our family to yours, we wish you all a very Merry and Blessed Christmas!

As we open our presents, drink delicious cups of holiday cheer, eat Christmas dinner, laugh (shaking our "bellies of jelly") and play with family and friends, let us all remember where our focus should be - on those things which are eternal.

We are blessed with family, friends and even strangers. And we're even more blessed to be counted as part of the family of God!

Matthew 1:23
Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us.

Luke 2:8-14
And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.

And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.

And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.

And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

Glory to God in the highest, and on earth peace, good will toward men.

Zachary's Fundraiser Part 2

2008-12-19T12:40:00.003-07:00

I want to add to the post below:

Renee and I are incredibly and deeply thankful, humbled, grateful and appreciative for all those who 'invested' into Zachary's Benefit fund. It is a sheer blessing we truly are in awe over.

Zachary's needs are being met medically and therapeutically because of the gracious giving, support and love from friends, family, strangers, friends of friends, and even local businesses.

We will NEVER forget that and our gratitude will forever be on those who helped us and God for making it all happen.

Zachary's Fundraiser - Smashing Success

2008-12-18T23:45:00.004-07:00

It's been two months and it's just proof of how crazy busy everything has been since Zachary's fundraiser (Oct. 18). I've now had time to put a short video together of the breakfast and silent auction as well as write about it.

The Zachary Charlan Benefit Breakfast was an excellent success. The actual event took place on Saturday, October 18th from 6:30 - 9:30 AM.

The idea for a fundraiser originated from Renee. We were drowning in medical bills and wanted to get Zachary into alternative therapy treatments such as hyperbaric, which insurance does not cover. Also, because of Colorado's Medicaid budgetary issues/problems/mess, even though Zachary has a top ten qualifying disability to receive Medicaid, he is on a years-long waiting list to actually receive the benefits. The story of Medicaid in Colorado is a lot more convoluted and difficult than that summary, but it gives you the picture: nope, we don't get it and won't be getting it for a LOOOOOONNNNGG time.

We are solutions-people, meaning when there's a problem we'll find a solution to it ourselves rather than sit back, whining and complaining the government isn't taking care of us. So I thought of getting another job, something for nights or weekends or even seasonal help to make extra money. Renee, knowing it was one of many solutions, objected because I already work full time, and if I worked even more then it would take time away from me being with Zachary and Renee. The result of which would cause even more stress and strife in an already stressful situation. The reverse was true when we thought about Renee taking on a paying job, even part-time. Who was going to watch Zachary? Would we pay to have a babysitter only so Renee could work in order to make enough money to pay the babysitter? It would get us no where and fast. Plus it would add on to the "time with husband and child" dilemma. Not to mention the fact that a special needs child NEEDS the full-time attention of a parent (i.e. MOM) and with additional stress and strife would only affect Zachary's overall quality of life in the home negatively.

On the encouragement of some family friends, Renee though it would be a viable idea to have a fundraiser. We would have an event to raise money to pay off Zach's existing medical bills (which were sitting on credit card statements because of Children's Hospital's lovely billing system... but that's a story for different day) and with any surplus, create an account strictly for Zachary's medical and therapy needs - an account that could pay not only for his regular medical costs, but also for alternative therapies not covered by insurance, like hyperbaric, accupuncture, chiropractic, etc.

I was opposed at first. I did not want to ask for money or take any kind of hit in my pride. After prayerfully considering it and looking at our other options, I was convinced by God, Renee, counselors, my pastor and others it was OK to do. It actually went back to one of my core beliefs - I believe in times of trouble, I can lean on the church and my community. This was all going to be for the benefit of Zachary and I would do anything for him as a father. I would beg on the street corner if I had to in order to get him what he needed medically. It's what we do as dads. So why not a fundraiser? I sucked up my pride and decided to go through with it.

[Side note: "John Q" has become one of my new favorite movies, mostly because I understand the main character. Now I'm not saying what the main character did was right or wrong. I'm also not saying that I would do the same thing. It's just a great movie showcasing the emotion and love a father has for his son and how far a father can go to save his child's life.]

Now before anything else, I want it to be clearly known Renee was the major force in planning this entire event. She was absolutely amazing in her organization and hard work - all of which was put in for Zachary. To make sure an account for him would be legit, she called the wonderful IRS and sat on hold for an hour and a half until she could talk with someone who set her up with a EIN number under the Zachary Charlan Benefit title. I also spoke with two different tax attorneys to get all my facts straight before we moved forward with sending the invitation flyers.

We told our pastor about the idea of having a pancake breakfast fundraiser. Well, he just happened to be good friends with the the owner of Abrusci's Restaurant in Wheat Ridge. The restaurant owner heard our story and donated his restaurant to host the event. He even offered to handle the breakfast food through his vendors. The restaurant does not usually serve breakfast, so when the owner inquired of the cost of breakfast food, the vendors were curious what it was for. He told them it was for a fundraiser for Zachary to help pay for medical and therapy treatments necessary to help a boy with cerebral palsy overcome a myriad of physical challenges. The vendors in turn donated all the food necessary for the event! Eggs, toast, pastries, potatoes, sausage, bacon, OJ, milk, etc, etc!

The idea was for us to have a free/open breakfast - no cost per plate or per person. It was based on donation only. That way families with many kids could come and eat for free and not feel obligated to have to pay more than others.

Renee also thought it would be good to do a silent auction. So through the help of Renee's mom, our Young Marrieds Group friends, church members and other friends and family, about 40 different auction items were gathered/donated including Mary Kay baskets, Wine & Cheese basket, Hunting Gear sets, books, autographed books, quilts, scrapbooking sets, restaurant gift cards, golf lesson at Golf Galaxy, rounds of golf at Buffalo Run, gym membership at Better Bodies, jewelry basket, beautifully framed photographs, etc.

Now I also wanted the benefit to be purposeful and informative, rather than just a fundraiser. The benefit was held before the election and Colorado had a ballot measure called Amendment 51 dedicated to end the waiting list of services for children and adults with developmental disabilities. We got two representative volunteers from the campaign to come to the breakfast and do two presentations, complete with flyers, buttons and yard signs. By the end of the breakfast, every single yard sign was gone. [Note: I did not include the campaign talk on the video, mostly because the ballot measure failed miserably in Colorado, so for right now Amendment 51 is over and done with. We did what we could, but quite honestly it was a tough sell when the language on the ballot description begins with the words "Do you want to raise your taxes $187 million..." especially during this time.]

In order to bring the community into our lives, I wanted Renee and I to address the crowd to explain exactly what cerebral palsy is, how specifically it affects Zachary, his improvements, his cans and cannots, and what we are doing both medically and therapeutically (both conventional and alternative) to help him. [This is the main core of the video clip - one of our presentations.]

We decided to run the benefit in "waves" so we would have a 6:30-7:30 wave of people for breakfast, then 7:30-8:30, and 8:30-9:30. We would do "presentations" of the Amendment and our talk on Zach during the mid-point of each wave. It worked out very well, although the first wave was dead except for one couple (so we only had two main presentations), but when 7:30 hit the people came steadily. Then at 8:30 it was swarming. In all we had around 200 or more people attend.

We originally planned on just using one room (in the video, it's the room where the food buffet is located) for everything, with the main dining area of the restaurant on reserve for any "spill over". Well by 8:30, both rooms were full.

Overall, it was extremely successful. We actually had many people come up to us and thank us for having the event and talking about Zachary's condition! God has truly blessed us by providing bountifully what Zachary needs to pay for his medical and therapy costs. We are able to get him hyperbaric treatments, music therapy, chiropractic, and soon accupuncture. We also do not have to stress over how we're going to pay for the other conventional therapies like physical, occupational and speech nor the upcoming eye surgery, nor the botox treatments, nor the new prescription eyeglasses, nor intensive therapy camps.

We will definitely manage Zachary's account very well and every single penny goes to his needs. Eventually, we will move the fund over to a Special Needs Trust, which has more legal protections and exists as a standalone legal entity (and will not affect his Medicaid standing, once he gets off the waitlist).

So here's the video - it starts out with a view of both dining rooms buzzing with activities of people eating breakfast and perusing the silent auction items. Then it goes into our pastor introducing Renee and I to the crowd as we talk about Zachary and concludes with another fast-forward look all the people.

Zachary, Lord of the Rings

2008-12-09T23:15:00.003-07:00

Zachary loves anything he can do on his own. He loves getting praise for doing actions as well. One of the recent activities he's learned is to take off toy rings from their stand and then re-stack them. It's difficult for him to do it - requiring a lot of concentration and energy, but we are so proud of him.

This is a little video I put together of Zachary being the Lord of the Rings (cheesy, I know, but that's how I roll sometimes).

Zachary rolling & army crawling

2008-11-19T20:55:00.000-07:00

I took this short video over a month ago, but just had time to get it on the computer and post it now. Zachary's been rolling over for quite some time now and has learned to army crawl a bit. Even in the span of a month, he is doing so much better now than he was in this video. He has more control of his left hand and can army crawl better.

I'll have to update soon with more recent video. But this gives an example of his movements recently - hey, he's mobile! We had to get a gate for our stairs, praise God!

Inspirational person with CP

2008-11-19T09:19:00.002-07:00

This was an ABC News "Person of the Week" story.

http://spotlight.news.yahoo.com/v/10682338/abc/20081115/av_abc_wnt/_ynewsspotlight_abc081114_wn_pow

Blog Fan

2008-11-10T20:44:00.002-07:00

So we were at our ARC Mobilizing Families class last Thursday for the resource fair and one of the resource representatives recognized Renee and I from our blog. They had been a reader ever since they surfed upon our blog from searching Amendment 51 information.

It was just a really nice feeling to be recognized randomly and in person, from our blog. They were Christian too, and commended us for talking about our faith.

Although I may not have a ton of blog hits or huge fan base, it was just really meaningful to have someone we did not know previously recognize us.

Zach's first artwork

2008-11-09T09:51:00.004-07:00

It's been a rough week and a busy one. On Monday, I busted my bursa sac in my elbow. That was pretty painful. Tuesday... let's not talk about Tuesday. Wednesday, small group; Thursday ARC Mobilizing Families class; Friday, Zach got botox and phenoyl injections again; Saturday, I had to be the substitute preacher for our church.

But I got something to cheer me up: Zachary's first artwork. He painted a pumpkin gourd at Occupational Therapy using these soft styrofoam holders to create a bigger grip on the paint brush.

So here I get to be a bragging parent! It's definitely a expressionism piece.

It's the Great Pumpkin, Zachary Charlan!

2008-11-03T13:00:00.001-07:00

Another photo journal. This is us visiting the local pumpkin patch and carving pumpkins on the kitchen floor. And another great sensory integration session with Zachary. He got to feel the guts and seeds - all the ooey gooey goodness of pumpkin carving!

You didn't tell me you were gonna kill it!

What I believe, What I Vote For

2008-11-01T22:26:00.005-06:00

I write this post on the eve of the election, not to be divisive, but to explain my beliefs in what I hold near and dear to my heart; what I value; what my worldview is; what I honor and respect; what I believe is best for my family; what I believe is best for my special needs son; what ultimately molds my decision as a U.S. citizen during this time.

I’m one who often times is passionate to a fault, too engaged and argumentative – this affects my tone and body language. It becomes intimidating to many around me. Because of this, I have made a very big effort to back off getting so wrapped up in politics. Don’t get me wrong – I’m still involved and have the ability to conduct civil discussions. Rather, I was convicted by the word of God to hold back and relax.

The Apostle Paul tells us directly in Romans 13:1b, “For there is no authority except from God, and those which exist are established by God.” No matter who you vote for, no matter who wins the election – it’s already been determined and sanctioned by God, the Ultimate Authority. We humans love to wrap ourselves in the emotions of it all, thinking we are so powerful.

Jesus stated it matter of fact right to Pontius Pilate’s face. In John 19:11a, Jesus answered Pilate, saying, “You would have no authority over Me, unless it had been given you from above;”

McCain, Obama, Nader (yeah, right!), but whoever wins, it is all part of God’s will.

The word of God has such powerful effect. It changed my heart instantly and I decided not to get so wrapped up in it all. God’s got it under control. I still have a duty as a citizen of my country to go out and vote for the best candidate, the best party most reflecting the values and principles set forth by God’s Word. I still have a God-given mind, opinions and a duty to participate in our democracy, something I carry through every voting year.

That all being said, knowing God has it all under control, here is my worldview, which affected my voting decision.

I believe in national security – protection and security for the entire United States as a nation-state, safety and security for individual families and people across America. One campaign believes in protecting us from our enemies. The other believes they should sit down and talk with them.

I believe in the sovereignty of the United States of America. One campaign will enforce and utilize the sovereignty of America to protect its citizen, interests and allies. The other would seek permission from the United Nations and poll the world’s approval before taking action.

I believe in the sanctity of life. One campaign has a voting record supporting life, showing their belief in the sanctity of it. The other has voted for death-on-demand, approving even the most atrocious, heinous acts of death.

I believe in personal responsibility. One campaign believes in personal responsibility, especially in their reform platform. The other campaign and affiliated political party believes on blaming every one else, especially Republicans, and putting your responsibility largely in the hands of government.

I believe in small government. One campaign wants to reduce the size and scope of government and stop it from becoming a “big brother” entity. The other wants to expand government in many aspects of our lives to the point of declaring they know what’s best for us.

I believe the U.S. Constitution is as viable a document today as it was 200 years ago and should remain the spine of our nation. One campaign agrees and will protect the freedoms given to us by the Constitution. The other campaign believes the constitution is fundamentally flawed, especially when it comes to mandating or allowing for the redistribution of wealth.

I believe in free market capitalism. One campaign believes in the American dream, to work hard and be successful, to have a free market, capitalistic society rewarding people for being hard workers and entrepreneurs. The other campaign believes in redistribution, sharing of the wealth – a socialist ideology – brought about by higher and higher taxes.

I believe in the First Amendment. One campaign allows free speech, talking with the press openly, even having the guts to appear on talk shows and parody shows that lampoon them night after night and whose cast members openly hate them. The other campaign has shoved three newspapers off the campaign plane this weekend and has blackballed news stations because reporters had the guts to ask tough questions.

I believe in the Second Amendment. One campaign believes in an individual’s right to own firearms and to defend themselves and their families and has a clear voting record protecting it. The other campaign has the most anti-Second Amendment voting record for any presidential ticket, ever.

I believe in lower taxes and fiscal responsibility. One campaign’s presidential candidate has never asked for an earmark on a bill and believes in cutting taxes for businesses and the middle class. The other has asked for hundreds of millions of dollars in earmarks, has voted for higher taxes on those making $42,000 a year, keeps lowering the yearly wage (from $250,000 to $120,000 in a few weeks – signs that it will keep going lower and lower) for their new tax plan and has an ultimate plan for grandiose spending to implement their social programs and huge expansion of government.

I believe in checks and balances within government. One campaign will be the check and balance to the Congress and has a clear record of working well with others across the aisle to get jobs done. The other presidential candidate has never worked with anyone across the aisle to get the job done, and if elected could bring in a very far-left one-party government (and Supreme Court justices).

I believe in racial equality. One campaign has not brought up race at all. The other has played the race card repeatedly and without warrant.

I believe in times of trouble, I can lean on the church and my community. One campaign supports this philosophy. The other believes all citizens should lean on the government for help.

I believe in the special needs community. One campaign has a candidate directly affected and involved in the SNC. The other has no such connection nor personal experience.

I believe that America is the greatest nation in the world. One campaign believes this. The other believes more in America’s flaws, wants to change the fundamental dynamics of what has made our country the greatest on earth, institute socialist policies, weaken our standing in the world (and the wife of their presidential candidate has never been proud of her country until her husband was running for president).

I believe the President of the United States should be a well-qualified individual with years of experience under their belt. One campaign’s presidential candidate has 22 years of military experience and more than 25 years of Congressional experience. The other’s presidential candidate has absolutely no military experience and had only two years of Senate experience before announcing his presidential run.

I believe sacrifice for your country should be held up to the greatest of esteem. One campaign has a presidential candidate who shows the visible, physical effect of sacrificing for his country as a POW for 5 1/2 years (and gets lampooned by “the media” for these physical deformities). The other presidential candidate has sacrificed nothing for his country.

I believe in the United States military. One campaign’s presidential candidate has given 22 years of his life to serving in the U.S. military and believes strongly in the power, resolve, success and ultimate victory of our forces. The other still cannot admit to the successes of the military in Iraq after the surge, and disrespects the military by considering it a mistake for the thousands of soldiers who gave their lives.

I believe freedom is not free. One campaign knows this all too well and has the scars (and military sons serving) to show it. The other presidential candidate does not understand nor appreciate the principles of freedom coming with a price.

I believe ultimately in Jesus Chris as my Lord and Savior, sovereign over all and that the Bible is the true, inerrant Word of God. One campaign believes in the foundations of this country on Christian principles and has a Christian presidential candidate and a VP candidate who is staunchly conservative Christian, believing strongly in the absolute truth of God’s Word. The other has lampooned the Bible in speeches, claims to be a Christian, has a voting record suggesting otherwise, and has a 20-year pastor of extremely questionable, extremist views, all of which are very un-Christian.

As I said above, this is what I believe and what directed my great freedom of voting. This is not to persuade, demean another’s decision or be divisive. God is in control over all, He is the one that I will always rely upon, He is Lord and Savior; not a presidential candidate.

Fall Leaves Sensory Play & October Visit from Nana Jo & PaPa

2008-10-31T11:45:00.003-06:00

There's a lot that's been happening in October. Plenty of pictures taken, new experiences for Zachary, my favorite time of year (for the weather and beautiful fall colors). And my parents, Nana Jo & PaPa, came out to visit.

Here's a photo journal of our leafy adventure with Zachary along with a video of him playing in the leaves for the first time.

Momma plays with Zachary in the leaves. It's a great sensory integration for him, both with the crinkly, dry feeling of the leaves and the loud crunchy sounds. Like anything sensory, we have to be patient and give him the time to explore and discover. Being too quick to get him to like it makes him frustrated and upset. But being calm, encouraging and patient let's him do it on his own, and every time he's liked the new textures.

Look at this camera, no this camera. Grandparents taking pictures with two different cameras, thus two different posing directions. Decent family shot though.

Nana Jo plays with Zach in the leaves.

PaPa has fun with Zachary.

Musically gifted Nana Jo plays maracas with music-lover Zachary!

PaPa and Zachary enjoy some smiles at the kitchen table.

This is a little video of Zach playing in the leaves for the first time. I had a friend from Illinois come out and visit, so he was recording and is the voice behind the camera. And the dogs barking constantly are the neighbors'. Also, I didn't know what good, creative fall song I could use, so Free Fallin' was my fall back.

Hyperbaric Chamber Treatment - First Session! Feel the pressure

2008-10-24T12:44:00.000-06:00

We found a local chiropractic office offering hyperbaric oxygen therapy. We've been looking around and pulling information from the Internet about this alternative treatment.

Hyperbaric chambers are most commonly used for scuba divers. They are individual chambers or capsules that fit a human body and can regulate the atmospheric pressure and oxygen content. It allows the blood absorb and saturate more oxygen to improve the healing process and hopefully, if even in the littlest way, help with Zach's brain injury.

Here's pictures from the first session. It's momma and Zach in the chamber. Zach will undergo 60 sessions at one-hour at a time, 5 days a week. We plan on documenting any progress we see.

Right now, this is the general state of Zachary -
CAN - roll over, army crawl, say ma-ma & ba-ba, take steps in his walker only with our assistance
CANNOT - sit up, use his fingers for fine-motor skills, point or use his index finger to press buttons
BODY - fisting both hands, toes pointing down severely, scissoring legs, arches, stiff, left side is weaker with difficulty of moving left arm
NOT EVEN TRYING TO DO - sitting up, crawling with both arms and legs

We have no major expectations for this treatment but do hope and pray it can help him, if even a little. He has done 7 sessions so far and has already started pre-communication babbling - saying weird sounds, experimenting with sounds rather than just saying ma-ma and ba-ba all the time. This has been a new development within the last few days.

We'll see what other improvements happen over the 60 sessions and also account for normal growth and development that would happen anyway during this time period.

From the International Hyperbarics Association:

What is Hyperbaric Therapy?

Hyperbaric Therapy, also known as Hyperbaric Oxygen Therapy, HBO or HBOT, is a specialized therapy that uses an increase in atmospheric pressure to allow the body to incorporate more oxygen into blood cells, blood plasma, cerebral-spinal fluid, and other body fluids.

At sea level the atmospheric pressure is 1ATA (14.7 psi or pounds per square inch), which allows the lungs to absorb a normal amount of oxygen from the air. At higher altitudes, the pressure drops and the lungs are not able to absorb as much oxygen from the air. This is why oxygen masks drop in an airplane at high altitudes – to increase the oxygen content due to the lack of pressure. The exact opposite happens at lower altitudes (below sea level). There, the pressure is greater (above 1ATA) and now the lungs can more easily absorb the oxygen, and at a greater volume.

The healing process occurs when a severely compromised tissue in the body begins to receive oxygen, and blood circulation to the tissue resumes. Note: The damaged tissue may not have been receiving enough blood for it to heal, due to a lack of blood circulation caused by the initial trauma.

Here lies the healing magic of Hyperbaric Oxygenation.

Inside the pressurized chamber, the story unfolds. The injury site now begins to receive a healing dose of oxygen through the surrounding body fluids and plasma—even if the blood supply to the tissues is compromised.

Furthermore, to boost the oxygen concentration in oxygen chambers, supplemental oxygen may be added into hyperbaric chambers during treatment. Doctors and therapists commonly use enriched oxygen or an oxygen concentrator, also called an oxygen generator to help supplement the oxygen. As explained before, this oxygen will become infused into the numerous types of liquids in the body—blood, plasma, cerebral fluids.

The oxygen uptake will remain in the body for a time after treatment.

The Gas Laws of Physics state that more gas is dissolved in a liquid by increasing the pressure of the gas.

Note: Breathing pure oxygen at 2 Atmospheres, gives 10 times the regular amount of oxygen (2 x 100% vs. 21%). In one hour, humans can inhale 2.4 pounds of oxygen! (Normal atmospheric pressure 1 ATA allows 6 pounds/day). Red blood cells instantly fill with oxygen and the extra oxygen dissolves directly into the blood fluid. In a few minutes, this extra oxygen builds up tissue oxygen levels far above normal.

The Principle of HBO is simple. Increase the atmospheric pressure and get a directly proportional increase in available oxygen. In other words, a twofold increase in pressure equals twice the available oxygen molecules to breathe.

How long the treatments last depends on the doctor's particular protocol for that individual. Every person and every condition is unique. Hyperbaric treatments may require a one-hour or two-hour session. A treatment program may require 3 treatments a week for several weeks or more.

Fight Night featuring Zachary in Center Cage

2008-10-17T11:25:00.000-06:00

Here's the photo from the MMA Fight I mentioned in an earlier post.

It was a regional MMA league called the Rocky Mountain Bad Boyz, where the owner sponsored Zachary for a percentage of the ticket sales to go to his medical account.

So Zach was introduced and announced in the cage and he got a big round of applause!

Zachary Charlan Benefit Breakfast

2008-10-16T21:26:00.007-06:00

Just a friendly reminder for those in Colorado to come on by Abrusci's Restaurant this Saturday morning (6:30 - 9:30 AM) for a free breakfast. They are hosting the Zachary Charlan Benefit Breakfast. So, FREE breakfast for everyone who comes (buffet style with eggs, sausage, bacon, toast, fruit, muffins, etc).

We will be having a silent auction. There are around 40 different items to bid on including... Mary Kay baskets, Wine & Cheese basket, Hunting Gear sets, books, autographed books, quilts, scrapbooking sets, restaurant gift cards, golf lesson at Golf Galaxy, rounds of golf at Buffalo Run, gym membership at Better Bodies, jewelry basket, etc.

There will also be a free raffle (qualify by being there) for Starbucks gift cards.

At 7:00, 8:00 and 9:00 AM we will have a presentation on Colorado's Amendment 51. After that, we will show a short video on Zachary's story from birth to now and another video of his progress in his new medical walker. I will also talk about cerebral palsy and specifically how it effects Zachary.

Breakfast ends at 9:30 sharp. We have to be done and start cleaning at 9:30. So come and come early for some free grub.

Walk This Way, Zach!

2008-10-14T20:48:00.000-06:00

Unbeknownst to us, a member of our Young Marrieds small group sent out letters and emails to their friends, family and coworkers when they found out Zachary could use a medical walker. They raised enough money for us to purchase it. This is our video of THANKS and deep appreciation to those special people who God worked through.

Zachary will be able to use this medical walker for YEARS to come as it can be adjusted as he grows. Right now, we are teaching him how to bring his feet up and forward and to weight-bare on his legs/feet. It's a conditioning process we hope and pray will allow him to walk on his own one day, God willing.

We can only attempt to express our true, heartfelt gratitude toward all of those who gave for a child they've met only through video, photo, blog. It touches us deeply and from the full capacity of our hearts we thank you and praise God for all of your generosity.

As you can see from this description of the walker, Zach will be able to use this for years as he develops and grows. He'll be Robo-Zach ;) We can't wait until he is strong enough to power it himself.

Our Testimony - Zachary's Story

2008-10-06T19:53:00.007-06:00

I was asked by my pastor to produce and edit our testimony for the grand opening of our church, Community Church of Golden. So Renee and I sat down and put it to tape. I edited it with pictures and video to give it emotional flavor. It's the story of Zachary's life from birth up to now, when he's 19-months old.

This is the short version ... I spent a long time on this video and I do have a "director's cut" about 18 minutes long. That one has all the details and goes more in-depth. This version is the short, 6-minute, church version. It played to our congregation on Saturday, Oct. 4th at the end of the sermon.

Vote YES on Colorado Amendment 51

2008-09-28T14:20:00.005-06:00

Colorado has an initiative on the ballot that is very important to us and to Zachary. It's called Amendment 51.

Amendment 51 helps people who need it most. It provides critically needed services to thousands of children and adults with developmental disabilities. In Colorado alone, more than 12,000 people with developmental disabilities such as Autism, Down Syndrome, Cerebral Palsy and Mental Retardation need - but are not currently receiving - lifelong care and support.

Many need assistance to eat, dress, bathe or use the bathroom. Others are young children, like Zachary, who cannot get desperately needed early intervention services that are proven to be effective. Some people have been on the waiting list for services for over 15 years!

For people with developmental disabilities and their families, there is absolutely no back up options for the vital services the need. Amendment 51 provides new funding for services families need now and in the future, including constant supervision, help with daily tasks, a place to live, job training, or nursing services.

Solving this problem is critically needed and long overdue. Amendment 51 is a small price to help adults and children who, through no fault of their own, face tremendous burdens every day just getting by.

When fully implemented, Amendment 51 raises $186 million per year and will go directly towards services that people with developmental disabilities need now and in the future. It raises state sales taxes only 2/10ths of 1%. And this is ONLY on state-taxed items so this DOES NOT include gas, utilities, prescription drugs or food/groceries.

It means an additional 2 pennies ($0.02) on a $10 lunch or 12 cents ($0.12) on a $60 pair of shoes.

This is NOT an amendment to the Colorado constitution. It only amends the Colorado sales tax statute and allows the legislature control.

The data regarding Colorado's spending on people with developmental disabilities: Colorado ranks 46h in the nation. With the passing of Amendment 51, Colorado will move into the top 25. New providers will be attracted to the state, creating more jobs. Federal Medicaid will match Colorado's investment almost dollar to dollar. Through Amendment 51, we can immediately provide a safety net for children and adults who, through no fault of their own, need help just getting by.

End Colorado Waitlist YouTube Grassroots Channel

Denver Post Article on Amendment 51

Denver Post - Letter to the Editor on 51

Fort Collins Colorodoan - Letter to the Editor on 51

If you live in Colorado and love our Zachary, please vote for this Amendment.

VOTE YES ON 51! HELP PEOPLE WHO NEED IT MOST... It's the right thing to do.

To Nathan, from Holland

2008-09-26T15:04:00.000-06:00

I remember when we were just dating and I said to you I was willing to go anywhere with you as long as you were content where we were at the time and you were not trying to find something you would never find just by going some place new.

I am still willing to go anywhere with you and "Holland" seems like it could/will be more fun, beautiful, educational and scary (you have always loved adventure) than any other place we could have picked on our own. God is awesome and he picked "Holland" for one person who loves adventure and trying new things and another person who hates to be scared and is not adventurous at all but still loves fun and beauty and seeing and experiencing it all with you.

I know now we will never be content just where we are but always striving to reach a new level of beauty and adventure all of us together with God carrying us all the way.

I love you

Renee

Welcome to Holland

2008-09-25T11:53:00.003-06:00

Often times, I feel like I have a chip on my shoulder because I have a child with special needs and the friends and family I have around me, don't. They don't understand what it's like and they will never fully understand. There's an emptiness, a disconnect, a loneliness.

It gets frustrating and aggravating to me, especially when I feel those closest to us dismiss Zach's condition as something minor. "Oh, he'll just grow out of it." "He's only a year behind... he'll catch up." "He doesn't look like something is wrong with him."

He has cerebral palsy. He has severe brain damage. We have the MRI to prove it. The diagnosis from a doctor of neurology is "severe brain damage, spastic quadriplegia cerebral palsy." All four of his limbs are hypertonic, stiff, and he has a very difficult time with controlling his gross and fine motor skills.

He's 19 months old and cannot sit up by himself. Compare Zach to another 19 month old and you'll quickly see the major differences.

Currently, we're attending a 9-week class called "Mobilizing Families" through the ARC in Jefferson County, Colorado. The class helps families navigate the "system", whether it be governmental, education, local services, etc. The main organizer for this class has a son in his 30s with the exact condition Zachary has. I can't bear to look at the pictures or think of Zachary's future in comparison. It brings me to tears. Wheelchair, locked arm, anger/frustration toward the disability...

There's a Catch 22. It's very difficult to get involved with special needs community and connecting with others who are going through similar experiences. Part of you doesn't want to see what may lie ahead for your child's life. You want to take it as it comes with blinders on and not even think what the future might hold. But the other side of you craves that connection with others who understand and there's a yearning to be prepared for what might be. Not to pigeon-hole your child into what he will/will not achieve, but to be prepared for what anything could look like in the future, while always maintaining a positive outlook.

In the first session of "Mobilizing Families", they read a piece by Emily Perl Kingsley about what it's like to raise a child with a disability. I thought it was pretty good in describing the situation, although no analogy can truly bring it justice. Here then is the article. I hope it will bring those who do not and will not experience what we are going through some kind of understanding for our situation and the situations of all the other children/families with special needs/disabilities.

c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Irony

2008-09-16T15:29:00.002-06:00

On the heels of the largest financial bankruptcy in the history of the U.S., I got not one, but three unsolicited credit card applications in the mail today.

And I'm already in debt up to my eyeballs...

Awesome.

Zachary Charlan Benefit Breakfast

2008-09-09T21:17:00.015-06:00

We are hosting a open breakfast on Saturday, October 18, 2008 from 6:30-9:30am at Abrusci's Restaurant in Wheat Ridge, CO. The purpose is to raise money for a Medical/Therapy account for Zachary. We have set up the account under "Zachary Charlan Benefit". I go into detail on why we're doing this on the second page of the flyer.

Below is the flyer/invitation we are sending out to friends/family and others.

We don't know how many people to expect, so we organized the breakfast into different "waves" since we only have a small area of the restaurant. So breakfast will be served at three different intervals, buffet-style. First one is at 6:30am, second at 7:30 and last one at 8:30.

During those three "waves", I plan to have an educational presentation on what Cerebral Palsy is, talk about Zachary's story & progress, and campaign for Colorado Amendment 51, which would provide thousands of children and adults with Autism, Down Syndrome, Cerebral Palsy, and Mental Retardation with critically needed care, through a modest, phased-in sales tax of 2/10 of 1%.

As posted on this internet flyer, you can RSVP for a timeslot by emailing us at ZacharyCharlanBenefit AT gmail.com (It is written like that here and on the flyer because of email spam, so "AT" = @).

All of this is a first step in a bigger picture. We are currently working with a business-minded gentlemen to set up a full non-profit organization called Child Athlete Sponsor aimed at helping many other children with special needs by getting athletes, teams or events to sponsor a child. Non-Profits with 501 c 3's are very difficult and time consuming to set up, so this will take time, but it is our goal. Our intent was to help Zachary first, then help others.

For instance, the owner of Rocky Mountain Bad Boyz (a Colorado mixed martial arts league) is sponsoring Zachary during an event where $1 of all ticket sales will go to Zachary's medical/therapy account. We're still working on this and will have more information later, but it may be for the next scheduled fight on Sept. 26. We would continue the partnership with the non-profit organization to have other special needs children sponsored for their medical/therapy needs as well.

NEW GLASSES! Big boy now!

2008-09-06T12:51:00.004-06:00

We got new wireframe glasses for big boy Zachary!

The million dollar grin

2008-09-04T21:50:00.004-06:00

Took this with my camera phone at dinner time tonight. That is one awesome smile!

Zach's photo log August 2008

2008-09-02T19:18:00.008-06:00

The botox really helped lessen Zachary's tone in both legs and arms. He has been loose and limber more than tight and twisted due to the botox treatment. Here he is, posed by momma, lounging by a friend's pool.

Momma searched all over for a cup with handles and a straw. When she finally found one, Zachary took hold of it and LOVES it because he can do it himself. This is one of the first steps in him becoming 'independent'. He can hold the cup and bring the straw to his mouth and drink away. He gets REALLY upset when either the juice/water runs out or we take the cup away from him.
Hello!
Our third EEG. Renee had noticed some 'ticks' that she was nervous about and we thought it best to get him checked just in case. All is well. Absolutely no seizure activity.

Zachary using a very new style walker at physical therapy. This is the walker that we've ordered to use in-home and should receive it next week.

Collage of Zachary's recent progress

2008-09-02T13:12:00.009-06:00

All these videos were taken by cell-phone videocamera for in-the-moment capturing. Please forgive the quality.

Zachary learned to pinch his food and feed himself by hand. He's been doing better and better at this. He especially loves french fries. It's a step to 'independence' for him so he locks to the fry like no other. In this video, he's eating cheese.

One of the goals Zachary accomplished in physical therapy is banging two objects together. The maracas fit perfectly in his hands and he learned to beat away. It's interesting with developmental disabilities, the goals in therapy are to teach him to be a baby/toddler. Sounds weird, but makes a lot of sense. Therapists and us as parents teach Zach step-by-step the regular little things that babies usually learn/do on their own. The great part about Zach is he's learning what he's taught!

Rollin' rollin' rollin'... keep that Zachy rollin'... Momma and Zach took a trip to San Diego while Dad was away in TX hunting wild piggy. Within 24 hours of being at sea level (and with all the family attention and over-stimulation) Zach began rolling all the way. He used to just be about to go 3/4 of the way, but now he can roll 100% and go both left and right. Put him on the floor now and he's mobile! It's awesome! Plus, our in-home therapist taught him to start using his arms/hands to pull himself forward, so Zach is in the beginning stages of attempting to army crawl.

Close to 18 months old now and he is still laughing like he was at five months. Zach is a joy to us and those he encounters. It's always a blessing to hear his deep laughs and giggles.

What I love about Texas

2008-09-01T10:07:00.016-06:00

I went to Texas recently for a two-day hog hunt. We drove from Colorado to a ranch by Gonzales, TX (outside San Antonio). It was a smaller size ranch, about 300 acres. They didn't have any "monster boars", but they had lots and lots of piggies. We saw animals constantly and were always chasing pigs. It was a blast. I was the only one of the 4-man group to get a pig.

It was a pistol and bow hunt, but because I'm not good with a bow yet, I decided to bring my .40 carbine instead. Throughout the two days, I took about 12 shots with carbine and pistol. Finally I connected on one at about 60 yards with the carbine. The signature "wwwrrrrreeeeeee wwwwrrrrrrreeeeeee!!!" rang out and I knew I hit him. They're tough little suckers and I had to give it a finishing shot. It's no where near trophy-size, but the young and fresh always make for better eating. Let's just say, Winnie the Pooh is very, very mad at me right now.

After hunting, we visited downtown Gonzales, the place where Texas’ independence from Mexico started. We then stopped by San Antonio and toured the Alamo. We did the tour of the grounds and listened to the auditory history of the battle. At the end, I asked the tour guide to see the basement. “There’s no basement in the Alamo!” (couldn’t resist…. And if you have to ask what this means,..nevermind).

I thought it's such a great state that I should do “Nathan's top ten things he loves about Texas list.”

10. Republic of Texas. It used to be an independent country

9. Patriotism, loyalty & service to country (USA). The general feeling of the whole state is conservative and dedicated to the great U.S. of A.

8. Capital punishment (yes, I am a Christian and yes I believe in capital punishment. I also know Jesus of the New Testament is also the same God of the Old Testament. Read the Old Testament.)

7. Hunting, lots and lots of hunting. And you don’t even need a hunter safety card to get a general license!

6. Lone Star Beer. As their billboard says, "Lone Star Beer. The national beer of Texas."

5. Everything’s bigger.

4. The Mexican-Americans in Texas actually speak fluent English.

3. Football culture.

2. The state is highly socially conservative Evangelical Protestant, in the Bible Belt, and has the highest percentage of people with a religious affiliation in the United States.

1. Texas-shaped waffles. You can make your own at all hotels serving Continental Breakfast … although, if you think about it, every other state has Colorado-shaped waffles

Ch-Ch-Ch-Changes...

2008-08-24T22:17:00.003-06:00

Lots and lots been going on that's kept me from posting more on the family and Zach's progress. I've accepted a job offer with a new production company and will be working from home. That right there has caused quite a "transition" for the Charlan household, but we're getting used to it.

Zachary reached a brand new milestone - he can fully roll over and over and over...

He and mommy took a trip to San Diego and either the attention, just the right time, or the increased oxygen levels at sea level affected him and he began rolling all the way around. He's officially mobile! It's wonderful to see and he gets excited about it and angry when an object like a couch or coffee table stops him from rolling more.

Renee celebrated her birthday on Friday. I went to Texas on a hog hunt last weekend. And all last week was spent setting up my new office and finishing the old job's projects.

So in the craziness of this phase of life, it's been a posting drought on the blog. Once I catch up with the new job and get my new MacBook Pro all set up (I'm SO excited), I should be good to go on posting more videos and other updates.

'Til then, God bless!

Seizing Educational Opportunities

2008-08-01T08:58:00.010-06:00

OK, first off I apologize for the really bad title to this post (you'll see what I mean), but I didn't have anything else.

Our first YouTube video upload was a four minute clip of Zachary having seizures recorded over the first weekend of October 2007. Though it may seem slightly morbid to videotape your child's seizures, it was extremely necessary. We had just noticed Zachary having these seizures and it was the weekend before we would be able to see a neurologist. He didn't have the seizures all the time - maybe 5-6 episodes in a day that would last up to 5 minutes at a time. If we took him to see the doctor, Zachary wasn't going to "perform" on cue and chances were Zach would not have a seizure while being analyzed by the doc.

So I had the video camera at hand all weekend, just waiting to capture an episode to show the "proof" to the doctor. Our first opportunity just happened to be my first up-close experience witnessing these seizures. I hit the record button before I even had the lens cap off. What proceeded was a 3:57 video of Zach going through jack-knife convulsions and his concerned parents talking to him during the whole ordeal. It's heartbreaking to watch, though, to date it received 7,166 views on YouTube.

One of those views was by the secretary of the Seizure Education and Resource Center in Washington State. She contacted me asking permission to use Zachary's seizure video in an educational presentation she would conduct in front of 100+ child care providers.

I readily agreed on the condition the video was only for non-profit use (not commercial). She used the video in a PowerPoint presentation to educate the childcare professionals. It now resides online on the organization's Resource Page, click on Children With Seizures Slide Presentation and scroll down to slide 20. The online slide-show will be used as a computer based training presentation - "one of five that they planned for certification of school personnel, law enforcement, and anyone else who'd like more information on seizures."

These are the emails I received from the secretary of the Seizure Education and Resource Center:

It's hard to know how to say this, but the video of Zachary having seizures is my absolute favorite of all the children's seizure videos that I have and for two reasons. First, he's so cute and happy and second, I can hear the voices of Mom and Dad in the background and neither of you sound scared or disturbed in the ways we so often see in parents and care providers.

In the majority of cases, parents would be beside themselves with some mixture of fear for their child and fear for themselves rather than calmly observant. It's really not much different with adult seizures. They make a great deal of difference in some people's attitudes towards others, but they're as irrelevant as having a friend with a car that sometimes stalls. It stops whatever you were doing but who cares, as long as you're with your friend and glad to be helpful when needed, what's the big deal?

Sometimes I encounter a nurse in the hospital who speaks very loudly and slowly to me, as if I have mental retardation instead of a seizure disorder. You'd think that, by now, we were past that but, we're not - not by a long shot, but I won't bore you.

The presentation I'm preparing is for a group of about 100 child care providers who are required by State law to participate in a required number of hours of training each year. It's actually our first big training event, as we're a new organization.
-------------------
I presented the PowerPoint last Saturday to over 100 people, in Spokane, Washington. It includes the video of Zachary, with an slide introducing it that calls attention to the concerned comments but calm reaction of his parents. One of the things that I was trying to emphasize in this presentation was the importance of remaining calm - not only because you're not much help unless you do but because, if we're in public, our response tells others how they should think/feel about seizure disorders. That becomes a part of perpetrating or countering attitude of prejudice and actions of discrimination from others, in the future.

First of all, he's so darned cute that people couldn't help but fall in love with him, despite the fact that they were observing seizures. It had the exact effect I was trying to tell them that someone having a seizure should have on them - remember that this is a person, not just a seizure. Second, it was especially impressive because it was a "real life" example (rather than a scripted video) of how people SHOULD react. It impressed the point that I could have talked about all day long and never been able to make in the way that you and Zachary did!

There's simply no doubt about it, Zachary was the star of the show and responsible for engaging their hearts in the topic and, from my perspective, hearing the rational, sane, calm comments of his parents on that video were just as important in indicating and guiding people in how to react...and I commented on that in the oral comments I made while showing the presentation. People can get really freaked out, as you know, and the two of you did more to demonstrate that's not necessary than anything I could have said. Thank you.

So, again, I want to thank you very much for allowing me to use that video as part of our presentation. What a wonderful gift you've given to a lot of people!

It just makes me proud of Zachary that at his tender age of 17 months (wow! how the time has gone!) he is able to touch the lives of others through the Internet and able to educate others who may not be familiar with conditions such as epilepsy and cerebral palsy. My hope and prayer is that through God's hand Zach continues affecting lives and teaching others for God's glory.

Couldn't resist putting myself in JibJab's new cartoon

2008-07-29T11:26:00.001-06:00

Send a JibJab Sendables® eCard Today!

Zach's Slam

2008-07-17T14:08:00.000-06:00

Zachary recently learned how to reach in physical therapy class. So Renee and I work with him on reaching for an object. We used this table-top toy, tilted it up so he could reach for one of the plastic "pages" and bring it down. Being a boy, he loved slamming it rather than just gently bringing it down.

I AM THE DISABLED CHILD

2008-07-07T21:12:00.003-06:00

((Blog Post by Renee Charlan))

This is a poem that was sent to us by a friend. I am not sure who wrote it, but I really liked it. I did remove a few lines that talked about a child who can not talk but the words I left speak to the heart of more people than you know.

I have realized lately the sheer number of families that "deal" with "these kinds of struggles."

I now like to say "these kinds of blessings," instead of struggles.

You really do learn more about yourself than you could ever imagine when you have a child the world does not see as "normal"

I AM THE CHILD

YOU OFTEN PITY ME. I SEE IT IN YOUR EYES. YOU WONDER HOW MUCH I AM AWARE OF.

I SEE AS WELL. I AM AWARE OF MUCH.

WHETHER YOU ARE HAPPY OR SAD OR FEARFUL, PATIENT OR INPATIENT, FULL OF LOVE AND DESIRE, OR IF YOU JUST DOING YOUR DUTY BY ME.

I MARVEL AT YOUR FRUSTRATION, KNOWING MINE TO BE FAR GREATER, FOR I CANNOT EXPRESS MYSELF OR MY NEEDS AS YOU DO. YOU CANNOT CONCEIVE MY ISOLATION, SO COMPLETE IT IS AT TIMES.

I DO NOT GIVE YOU REWARDS AS DEFINED BY THE WORLD'S STANDARDS...GREAT STRIDES IN DEVELOPMENT THAT YOU CAN CREDIT YOURSELF. I DO NOT GIVE YOU UNDERSTANDING AS YOU KNOW IT.

WHAT I GIVE YOU IS SO MUCH MORE VALUABLE.

I GIVE YOU OPPORTUNITIES.

OPPORTUNITIES TO DISCOVER THE DEPTH OF YOUR CHARACTER, NOT MINE; THE DEPTH OF YOUR LOVE, YOUR COMMITMENT, YOUR PATIENCE, YOUR ABILITIES; THE OPPORTUNITY TO EXPLORE YOUR SPIRIT MORE DEEPLY THAN YOU IMAGINED POSSIBLE.

I DRIVE YOU FURTHER THAN YOU WOULD EVER DO ON YOUR OWN, WORKING HARDER, SEEKING ANSWERS TO YOUR MANY QUESTIONS, CREATING QUESTIONS WITH NO ANSWERS.

I AM THE CHILD WHO IS MENTALLY IMPAIRED. I DON'T LEARN EASILY, IF YOU JUDGE ME BY THE WORLD'S MEASURING STICK. WHAT I DO KNOW IS INFINITE JOY IN THE SIMPLE THINGS. I AM BURDENED AS YOU ARE WITH THE STRIFE AND CONFLICTS OF A MORE COMPLICATED LIFE.

MY GIFT TO YOU IS TO GRANT YOU THE FREEDOM TO ENJOY THINGS AS A CHILD, TO TEACH YOU HOW MUCH YOUR ARMS AROUND ME MEAN, TO GIVE YOU LOVE. I GIVE YOU THE GIFT OF SIMPLICITY. I AM THE CHILD WHO IS MENTALLY IMPAIRED.

I AM THE DISABLED CHILD. I AM YOUR TEACHER. IF YOU ALLOW ME. I WILL TEACH YOU WHAT IS REALLY IMPORTANT IN LIFE. I WILL GIVE YOU AND TEACH YOU UNCONDITIONAL LOVE.

I GIFT YOU WITH MY INNOCENT TRUST, MY DEPENDENCY UPON YOU. I TEACH YOU OF RESPECT FOR OTHERS AND THEIR UNIQUENESS. I TEACH YOU ABOUT THE SANCTITY OF LIFE. I TEACH YOU ABOUT HOW VERY PRECIOUS THIS LIFE IS AND ABOUT NOT TAKING THINGS FOR GRANTED.

I TEACH YOU ABOUT FORGETTING YOUR OWN NEEDS AND DESIRES AND DREAMS. I TEACH YOU GIVING. MOST OF ALL, I TEACH YOU HOPE AND FAITH.

I AM THE DISABLED CHILD.

It's not always sunshine, roses & godly happiness

2008-07-02T21:07:00.012-06:00

I began a blog post when I first found out Zach’s diagnoses. It was never “officially published” on the site. Feeling it was a tad too intense, I tabled it for, I guess, now.

We've been getting comments on our blog, through friends and family and general notes and comments on our YouTube and GodTube channels. Mostly they are messages of encouragement, some admiration, on how well we've been handling the situation. Some are completely amazed beyond belief of how positive we are, what great parents and how much faith and trust we have in God.

We appreciate these comments and they do encourage us. But the part I'm afraid remained (remains) hidden was the intense struggle, the fierce emotional pain, especially I, went through in the beginning and sometimes battle with even today.

In an effort to relate my true feelings during that time, here is an open account of what I went through - my inner-feelings during my stage of anger.

The proverbial 'they' say the five stages of grief are denial, anger, bargaining, depression and acceptance. Step One, denial, lasted either a few seconds or I skipped it all together. Consider me in Stage Two: Anger.

I am angry.

I am anger.

The level of anger I have has just about consumed me to the point where I'm almost the emotion itself.

You remember the scene in "Fight Club" where Edward Norton is in the basement of some grungy nightclub and fights this 'pretty-boy'? Norton pummels the guy in such a furious rage, bashing his face into the pavement over and over and over. When the guy finally manages to perform a 'tap-out', the 'pretty-boy's' face is a bloody pulp. Norton's alter ego, Brad Pitt, says something to the effect of, "What happened to you, psycho?"

At this moment, I am Edward Norton in that movie. That's about the level of anger I have seething inside my flesh.

I want to yell and scream. I want to punch anyone who looks at me the wrong way. I want to run those jerks off the road who drive stupid. I want to berate those who use the term 'retard' or 'palsy' or any other degrading term and pummel those who think it's funny to impersonate either. Even though I've been guilty of all the above at several points throughout my life; now it's different.

That’s about as far as I got with the “un-posted-post”. To add more to the piece, I was angry and upset especially with God. I didn’t want to pray to Him. I didn’t want to talk to Him. I was so furious He would do this to us. I asked myself - WHY my baby? Why can't he be like all my friends babies? Why can't I have what my friends have?

All we had prayed for, every night, for the entire pregnancy, was for our child to be healthy and “normal.” That was it. Was it so hard for God to hear our prayer and make this happen? Why, why, why? I just couldn’t take it.

I thought, too, am I being punished? What did I do wrong to You, God? I looked at others and their children with contempt. Especially those who didn’t even know God, those who weren’t Christians. I was furious they would have healthy, perfect babies meeting all the little milestones at the exact time BabyCenter.Org says they will.

The feeling of yearning to get through the darkness and the clouds to the other side of light and happiness is what I struggled with every day. When was this going to end?

I developed a friendship with a gentleman in Iowa who had a daughter with Angelman’s Syndrome. Tragically, at the age of 7, she went to be with the Lord. After her death, he and his wife decided to adopt not one, but TWO more girls with the same condition!

Renee and I were blown away at the capacity of their hearts. Here we were struggling to comprehend what we were dealt with and suddenly we had this family that became our role model. We looked up to them with complete awe. What BIG hearts! What amazing testimonies! What complete devotion to God’s plans!

Could Renee and I ever get to that place?

With that friend, I found someone who could understand what I was going through in my early stages of grief after the diagnosis. Renee and I talked about how amazing they are and how pathetic we were.

But thinking about it, they had time to wrap themselves around the situation. At the time, Renee and I were sitting on less than a month of the realization of Zach’s condition. It was OK to be angry. It was OK to be sad and struggle with the comprehension of what God had laid before us. It was OK, because we would not be in that dark, gloomy state of mind for long.

So we let God work on us. We prayed for wisdom and guidance. And we received it, from God, over time. We trusted in Him who has control over our lives. He has never let us down. We need only to align ourselves with His ultimate and perfect will for our lives. God is righteous, holy, perfect and all-knowing and we put all our trust in Him.

John 3:1-3 - As He went along, He saw a man blind from birth. His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

That is a passage I now hold near and dear to my heart. It answered the question of, “Am I being punished for something I did? Did I do something wrong to deserve this?”

God’s answer – No, my child, you did not. This happened to so that My (God’s) glory can shine through your son.

And it has. And I know it will continue.

Zachary has touched so many lives with his personality, his smile, his laugh and his cute glasses. I made a connection with my Iowa friend that has become, and will continue to be, a deep, lasting relationship. Various others have contacted us and reached out to us. People have been touched by Zachary’s videos on YouTube, GodTube and our blog. We've been able to share with people all over the world - we've answered questions about seizure medication and neurologist referrals and more.

We've encountered a family who, earlier this year, lost their child only three days after birth. Zachary was the first baby that mother held, or even wanted to hold, since that tragic day.

I don’t know what God has in store for Zachary, but I think it will be big and ultimately all for His glory.

None of this would have happened if Zachary was born “normal”. We’d just be another set of parents in the crowd – nothing special, just the same old, same old. We wouldn’t be strengthened in our characters and faith and devotion to God quite like we have with Zachary and his condition.

I’m sure there will be much more in store for Zachary. He may teach those around him, children of our friends, that a ‘special needs’ person isn’t someone to be afraid of or make fun of. He’ll be able to teach those kids incredible life lessons at a young age.

I battled with depression and the stages of grief throughout this journey (and will probably continue to in years to come).

I could go on and write so much more, and hopefully I will in the times to come. I want to conclude this post with a focus on the God of the universe.

I grew up Catholic so I know what it is to just be “taught” what you need to know. The Bible has a very clear message from God – HE LOVES YOU. HE loves you so much that HE is always there for you. Not only is HE always there for you, HE gives lovingly. The Father gave His only Son, Jesus Christ, into this world to live the perfect life for all of us and offered Himself as the ultimate sacrifice for ALL our sins (past, present and future). HE died on that cross and rose again on the third day, proving to all that HE was God and had defeated death.

We are saved for eternity in heaven with Christ by the work Jesus did. There is nothing we can do in a “works” sense to be saved. It is simply by trusting, believing, having faith in the One who has called us to Him.

John 3:16 – “For God so loved the world that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life.”

God is there for us ALL the time. He will never leave us nor forsake us. He will help us overcome all of life’s trials. He will make us to persevere and triumph.

God’s will is perfect. He has an ultimate plan that will completely amaze you. Trust in Him.

Walking with the Lord isn't always going to be sunshine, roses and happiness. No. There will be storms. There will be hardships. There will be pain, suffering, heartache.

Jesus never promised us a rose garden in life this side of heaven. Christianity is a struggle, a battle, but Lord Almighty, is it worth it!

Zachary's Cerebral Palsy - Vlog - A Parental Perspective

2008-06-10T22:23:00.000-06:00

My first vlog. This is the second part. This one is more personal on my feelings as a parent of a special needs child - how Zachary's cerebral palsy affects our emotions as parents.

Zachary's Cerebral Palsy - Effects and Therapies

2008-06-10T22:18:00.001-06:00

My first vlog. It's in two parts. This one is an informational piece on Zachary's cerebral palsy condition and how we work with him one-on-one.

Just so everyone knows, my wife Renee works with Zachary the most every single day. She's an absolute blessing and a wonder in Zach's life. She doesn't like being on camera though, so I do these pieces to get information out and let family, friends and others know what we go through. Just wanted to clarify that!

Renee was working and Zach and I had daddy/son time, so I made this video.

You know you have a child with special needs when...

2008-06-03T20:52:00.006-06:00

Received this as an email from a friend. I added a few of my own and adjusted some too fit our situation. (Italics are mine):

You know you have a child with special needs when...

You compare ER's instead of grocery stores.

You compare your child's oxygen saturations.

You view toys as "therapy"

You don't take a new day for granted.

You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

The clothes your infant wore last fall still fit this fall.

Everything is an educational opportunity instead of just having plain old fun.

You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that is speech therapy) and when they smear ketchup all over their high chair (that's OT), or throw their toys (that is PT).

You also don't mind if your child goes through the house tooting a tin whistle.

You fired at least 3 pediatricians and could teach your family doctor a thing or two.

You can name at least 3 genes on chromosome 21.

You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!

You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere.

You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!

Your vocabulary consist of all the letters OT, PT, SP, AS, ASD, VSD, IEP, IFSP, etc.

You keep your appointment with the specialist even though a tropical storm is raging because you just want to get it over with...you waited 8 months to get it...and besides, no one else will be there!

Fighting and wrestling with siblings is considered PT.

Speech therapy occurs in the tub with a sibling.

When potty training is complete, you take out a full page public notice in the Washington Post.

When the Doctors/Specialist/Hospitals etc. all know your name without reffering to your child's chart.

You keep daily growth chart.

You calculate monthly statistics for the number of times your child vomits, and did this for more than a year.

You phone all your friends when your child sits for the first time, at age two or longer.

With a big smile on your face you tell a stranger that your four year old just started walking last week.

His medical record is several inches (more like a foot for Zach!!) thick and growing.

You've become 'regular phone buddies' with the customer service rep at your insurance company.

You've completely created a new organizational system for all the medical bills - who gets paid what, when, how much, and how many bills can be put off for a while...

Your living room is full of strange looking contraptions (medical equipment) that look like they're from a sci-fi flick.

Your child's diet consists of more "what he CAN'T eat, than what he CAN"

You now understand how hurtful those words you said as a kid really are

You feel like snapping and killing someone for their ignorance and insensitivity

You begin a new career as "inventor" by inventing products needed for your child

Every toy your child has makes noise and flashes lights (sometimes they're as sensitive to go off just by walking on the floor)

You have a new belief...that there are guardian angels who watch our children here on earth

Cluck! That's funny!

2008-05-26T21:52:00.002-06:00

We took these two video clips after he was diagnosed as officially seizure free. Grandpa Kainz discovered that Zachary thinks "tongue-clucking" is absolutely hilarious. So we clucked away on the second part of this video to get Zachary to give us his awesome, belly-busting laugh.

Confirmed: No More Seizures

2008-05-22T16:22:00.007-06:00

Zachary had a follow-up EEG a couple weeks ago. The purpose was to verify the seizure activity in his brain had completely ceased. He's entirely off any and all seizure medication (we weened him off his last medication a week before the EEG).

After connecting the electrodes and wrapping his head, Renee laid with him on the hospital bed and patted him to sleep.

The results were very good - no more seizure activity at all!

The neurologist who has seen Zachary since the beginning of the seizures analyzed the EEG reading and told us he has normal brain waves for a child his age! Praise God!

We are still aggressively treating the conditions he has from the Cerebral Palsy. He receives both Physical and Occupational therapy one to two times a week. Today we met with another CP-specialist neurologist who assessed Zachary for botox and phenoyl treatment. She determined that he would benefit from it, so we will be making an appointment soon for the treatment.

The dosage and injections will be small and centralized to specific, affected areas - namely his forearms (to help with his arms and hands twisting outward), his legs (to help with the scissoring and stiffness), his left calf (Zach's left side is more affected by the Cerebral Palsy than his right side), and possibly his thumb muscles (his thumbs tend to clench inward).

The idea is to have those injections relax his rigid and spastic muscles (affected by the CP). The treatment should last for three or more months. While on it, we would take a very aggressive approach in both physical and occupational therapies to help his brain learn/remember how to properly use his muscles.

1960 El Camino

2008-05-18T23:06:00.003-06:00

When I was 16, my father found a classic 1960 El Camino for sale while driving his postal route. He picked it up, originally as a 16-year-old birthday/1st car present. The intent was to fix it up, but with the unfortunate busyness of life, it never happened.

For years it sat in the garage. When my brother turned 16, the car was fixed up to a point to be drivable. He drove it to and from school and who knows where else. I was 1000 miles away at college at the time.

More years came and went. Discussions on "what to do with the Camino" went all over the board from general storage to even selling it. Eventually, it was mutually decided between my parents and myself that the best option was to keep the car - definitely not sell.

The car is a classic. Sure, a lot of classic muscle cars carry that title, but seriously, how many times have you seen THIS car on the road or in car shows? It's almost a rarity.

As time progressed, I graduated college. My folks came out to Boulder for my ceremony and presented me with a small wrapped present. It was a die-cast model of a 1959 El Camino (basically the same exact look as the '60 - not much changed). They explained that their intent was to fully restore the vehicle to excellent running condition and present it to me as a graduation gift.

My parents were pleased to announce a few days ago that the work has officially begun! The car is in a professional auto-restoration shop and the progress of the project can be viewed at KevCar Customs (scroll down to the bottom for the piece titled "Special Delivery").

I'm as excited as the day I got my driver's license! I can't wait for this baby to be finished. When I finally get the vehicle, it will be our "luxury car" - well with gas prices the way they are, it would cost an arm and an leg just to "cruise" around. But no matter the gas cost, this baby will be sah-weet. The Colorado Charlan family will take it to car shows, hopefully enter into parades and have lovely Sunday afternoon cruises around in the beautiful Colorado summers.

More Zachary Pictures from April & May

2008-05-06T22:18:00.003-06:00

I know grandma and grandpa were wanting updated pictures! Sorry it took so long.

Zachary Pictures from April & May

2008-05-06T22:10:00.005-06:00

Turkey Season

2008-05-05T08:14:00.003-06:00

No turkey over the weekend. It was still nice getting up in the mountains. Saw tons of animal sign of bear, mountain lion, elk, mule deer and turkey. But never heard a gobble. I think they're silent because of the weather. There's still three more weeks in the season so hopefully with the warmer temperatures moving in, they'll get moving and talking.

What I'm really excited about is a close friend told me this weekend that he wants to get into hunting and asked me to help teach him. We'll have to get out on the range soon and get him signed up for a hunter safety class. I'm really excited to have a friend/companion for the outdoor adventures.
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Here's a picture from the skeet & trap range at Three Forks Ranch last fall.

Spring Time

2008-05-02T15:46:00.005-06:00

It's spring and for an outdoor guy that means turkey hunting and fly fishing. I'm going out for my first turkey hunt tomorrow in the Pike National Forest. Though with the on again, off again weather we've been having, I imagine those Toms and Hens will be completely confused and completely silent. Here's hoping for a successful hunt nonetheless. At least I'll be getting out into the mountains and the woods. May find a few sheds, too.

Besides the turkey hunting, I'm gathering up materials to get into fly-fishing for the rest of spring into summer. A couple years ago, a friend taught me the bare-basics of it and only recently did I take a formal 'class'. With my friendships in the outdoor industry, I now have a rod, reel, net and just need to collect some flies from the local shop (along with a fly chart to tell me which ones to use when).

So I'm looking forward to hitting the waters this spring and can't wait until Zachary is old enough to join me.

Here's a picture of my fly fishing at Three Forks Ranch last fall. Hopefully, I'll be able to post a picture from a successful turkey hunt after this weekend.

Wyoming Documentary, managing producer

2008-03-11T14:45:00.002-06:00

Today, Versus will air the primetime premiere of "Wyoming: Predators, Prey & People," a documentary on the grizzly bear and wolf situation in Wyoming and the national implications it has.

This was a project over a year and a half in the making. I was the managing producer of this one-hour special. Here's the press release.

It airs today (Thursday, March 13) at 7pm EDT (6pm CDT, 5pm MDT, 11pm West Coast). It will have a repeat airing on Saturday, March 29 at 2pm EDT.

Happy 1st Birthday, Zachster!

2008-03-11T07:55:00.003-06:00

Special Thanks goes to my friend and star editor, Scott Denney!

Today Show - Stem Cells & Cerebral Palsy

2008-03-10T09:21:00.000-06:00

The Charlan Channel

2008-02-25T11:14:00.002-07:00

Some reports are coming in from family members about difficulty viewing videos on the blog. It seems like the video embedding works on some web browsers and not on others.

So for direct access to The Charlan Channel at You Tube go to:

http://www.youtube.com/ncharlan

God's Gift: A child's laughter

2008-02-24T21:20:00.005-07:00

Zachary is doing amazingly well. His development and growth are both areas of answered prayer by God. He is an absolute joy. We're still working on rolling over, sitting up and holding our head straight. But overall, he is a VERY good baby and will turn one-year-old in a couple weeks.

He has started saying "da-da" after half a week of teaching him the word. He laughs at funny faces among other things as you'll see in this video. Music is one of his favorite things and he definitely prefers classical over anything else. Zach will play in his crib for an hour listening to classical music and be completely happy.

Because of his body language and other communication skills, we think he is going to be very intelligent cognitively - but that's just our speculation. When we took him into see the neurologist who treated him during the seizures, the doctor was VERY surprised and pleased to see how well Zachary was doing cognitively. (From his reaction post-seizure, it made Renee and I realize that he didn't have a very good outlook for Zachary when he was having the seizures). So we praise God for the answered prayers and for how far He has taken our little boy over the past year.

Zachary will have physical obstacles to overcome, but we are getting him registered with a Cerebral Palsy rehabilitation clinic in March.

Here is a video of Zachary's laughter for everyone's delight.

Happy Valentine's Day, My Love

2008-02-14T16:20:00.002-07:00

My dearest Renee,

What a year. We’ve gone through a whirlwind of emotions and struggles in 2007 – it never seemed to stop. Together, hand-in-hand, we endured obstacle after obstacle that was thrown our way with Christ as our Leader. Looking back, it’s amazing the amount of serious stress, strife, worry and anxiety we went through. It’s equally amazing realizing in the seriousness of it all, the majority of couples won’t ever come close to the trauma and triumph in a lifetime that we’ve gone through in a year at the young age of 26.

Most couples in this fallen world would not be able to endure the way we did. And not only did we endure, we grew and became deeply strengthened in our relationship with each other and with God. Many couples would have fought consistently or maybe not talked at all – leading themselves into a downward spiral of silence, slowly creating a deep and wide canyon in between them eventually ending in divorce.

But not us.

Our marriage, our relationship with God is too strong to succumb so easily to give up or give in to the evils that may come. No. Together, as a team with our Father, we press forward. We are intertwined with the Creator – a bond that cannot be broken. We owe Him all the glory and praise for taking us through all the hard times to define and build up both our characters.

I am so blessed to have you as my better half; so blessed by our good Lord to have you as my wife, the mother of my child and my best friend. I am amazed at your strength, both inner and outer. In this one year alone, you have shown me the amazing depth of your character. Words will be difficult to describe accurately the way I feel for you.

You endured a difficult pregnancy going through physical discomfort that I will never be able to comprehend. The week before Zachary’s birth, you suffered the worst, being confined to bed rest as your body went into preeclampsia. Then we got news from the doctor that Zachary had to be delivered 5 weeks before he was due by emergency c-section. With no preparation, no warning, no comfort or time, you were rushed into surgery, anesthesia injected in your spine while the doctors conducted major surgery on you with me by your side.

Our son was born, unable to breath. In an instant, I was torn from your side as I was pulled with the nurses into the NICU where he was intubated. Once the doctor and nurses had him stabilized, I went back to your recovery room. We embraced and cried not knowing what was truly happening. Doctors requested an immediate transfer to the NICU at Children’s Hospital in Denver. You barely had a chance to see your child, let alone only one chance to actually touch him. As the Flight For Life team left with our three-pound baby in an incubator, we gave tearful goodbyes as I followed Zachary, and you stayed to recover from surgery.
Separated from your child and recovering from major surgery, your strength and will came through in overwhelming ways. The first day, I shuffled back and forth between you and Zachary. By Saturday afternoon, you were at my side in Zachary’s NICU room. What would normally take four-days of major surgery, took only one and a half for you. Renee, you were so determined, so full of strength to be with your child it was an almost supernatural recovery effort to get up and prove to the nurses you could walk on your own within 24 hours of having a C-Section.

You were absolutely amazing during those first few days – and you continue to amaze me all the time.

We spent the next thirty days in the hospital with Zachary. The first few days we slept at Children’s. Then it was the long days – I’d go to work, you’d go to the hospital. I’d meet you at the hospital after work. We’d stay with Zachary for a few hours then go home and start it all over again – day in and day out for 30 days. You were there hours upon hours upon hours by his side. Dedication. Commitment. Devotion. Strength. Love.

Love in a very pure form. Love the way only a mother can express.

Even though he was in an incubator, you weren’t scared to touch him, hold him, handle him and do everything the nurses usually did. Eighty percent of the hours in the day, you were the only mother on the NICU floor. Nurses were in awe of your persistence and stamina. Often times, you had to be urged to take a break, get some food, take a nap or just take time for yourself.

Your faith, the way you handled your emotions as well as your outward and inner strength became an inspiration and an example for me. It continues to be.

We brought Zachary home at four pounds five ounces. We had the tiniest baby around – and the cutest one at that. Things went well for a few months until we both started noticing subtle behavior/posturing we just knew in our heart were not normal. Then the seizures started.

There can be nothing scarier for brand-new, first-time parents to experience than to see their only child experience several seizure sessions a day. If that wasn’t enough, the bigger diagnosis after an EEG and MRI was almost too devastating for any parent to bare – cerebral palsy, significant brain damage, the unknown of eventual growth and development.

We had just recovered from the NICU not five months before. How could we take this news? What were we going to do? Why us? Why Zachary?

Both of us fed off the strength of the other – a teeter-totter of leaning on each other, one strong/one weak, taking turns to support the structure of our marriage, our family. It’s the incredible dynamic of a good relationship, and we had it, praise be to God. Our Lord and Savior, Jesus Christ was there to hold us up through it all.
As hard as it was to accept, we met the diagnosis head-on, determined to get all the care, therapy and treatment necessary for our child. A team, a unified force, we bonded together in faith, hope and love to take care of our child.

After another 24-hour, eight-day stay in the hospital, an injection medication was able to stop the seizures all together. We stayed by his side the entire time he was at the hospital and went through even more stress as the insurance company, hospital and pharmaceutical company battled out costs and coverage responsibility.

Through Thanksgiving and Christmas and the turn of 2007 to 2008, we grew closer together as a couple and as a family. It was easier to see the truly important things in life and to enjoy them to the fullest. You’ve taught me patience, endurance, love and faith.

Today, the greatest things in the world to me are the simple ones: taking naps with you and Zachary, doing our Bible studies together, playing with Zachary together, praying with him before bed, praying with you, and just having dinner with you.

Looking back over this tumultuous year and the way we handled everything, I know without a doubt, together, with God, we can tackle any obstacle life throws our way. We overcame together. We battled it out together. We accomplished and grew together. And together, we make each other better.

Renee, I love you very much and that will not change. Love is more than a feeling or roller coaster emotion. It is more than that. It is commitment. And that is what you have from me. I am committed to you for life and I couldn’t be happier. Thank you for your love, affection, respect and lessons you’ve taught me. Our life, our family, our faith are more than enough for me. You do complete me.

Love,
Nathan

Collage of Video Clips

2008-01-08T23:09:00.001-07:00

This was not edited, just captured and strewn together so I could post this as quickly as possible for family. (I say this as a disclaimer since I'm a TV producer). It's a collection of short clips taken of Zachary over the last month or so.

Message Board Talk

2008-01-08T13:50:00.001-07:00

Apparently my last blog about Zachary, Questcor and ACTH got discussed in a Yahoo Message Board. Looks like I may have to post a more in-depth account of what we dealt with on that specific issue.

Zachary - Seizure Free

2008-01-07T21:20:00.000-07:00

I know it's long overdue for an update. Things tend to get away from me and updating the blog gets pushed off more than it should. First I want to thank all our family, friends, friends of friends and those we have not met who continually check in for updates and news. We really appreciate it.

Back in October, Zachary went through seizures for three weeks while being treated on a medication called Vigabitrin. After the three weeks, the medicine only made the seizures lessen, not fully stop. So on Nov. 1, he was admitted to the hospital to start a new treatment called ACTH - it is a hormone/steroid injection that has been a neurology standard for treating infant spasms since the 1940s. The treatment is one shot a day. The bad thing about the medicine is the potential for nasty side effects like high blood pressure, high glucose levels, weight gain and in worse cases infant diabetes.

Now the ACTH medication is made exclusively by a company called QuestCor that basically monopolized the rights, patents, etc on the drug and decided that it would be smart to try and tweak the medication and sink lots of money into research. That was within the last few years. Keep in mind this drug has been in existence since the '40s. So because Questcor is a small company and they spent millions on the drug, they decided to jack the price up from approximately $1600 a vial (which is about 10 shots) to $23,000 a vial.

Initially our insurance outright rejected covering the drug. So we were stuck at the hospital while the insurance company, Questcor and the hospital figured everything out for us to secure this drug to self-administer at home. While in the hospital, the insurance had to cover the injection of the drug so it was almost our sanctuary. And as desperate parents wanting nothing more than to stop the seizures we were willing to do anything. We stayed at the hospital with him 24/7 sleeping on the floor.

During this time, Zachary's seizures actually increased in intensity and it was extremely scary. He was also becoming more aware of them and would not only get upset, but would try to fight them. On Nov. 5, he had his most prolonged spasm session ever which lasted 45 minutes with 175 spasms. After that, there were no more.

Zachary has been seizure free since Nov. 6. When a full day passed without seizures, we were convinced it was the work of God and the ACTH. We were not going to leave that hospital until the treatment was complete. But, praise God, on Nov. 8 Questcor was able to make my insurance cover the full treatment under a major medical clause. The total cost of a month's worth of the injection: $72,000.

After the month's treatment under close monitoring of visiting home nurses and a weaning off period, Zachary is completely off the ACTH, and completely seizure free. We even had another EEG conducted and the brain waves proved there is absolutely no more seizure activity.

Since then, Zachary's development has basically skyrocketed. The seizures held him back considerably and even regressed him a bit. But now he is doing great thanks to the grace of our Lord and Savior Jesus Christ.

We know that Zachary has been in the prayers of Christians around the country and even the world from those that we know and even those that we don't. Prayer requests went out and Zachary was included on prayer lists of many different churches, families, small groups and others. Zachary's success and healing has come from all your prayers and the work of God our Father. We thank you all and praise the Lord!

There's so much more to write about that could all be separate posts in themselves. I want to talk about the change in perspective a parent goes through when experiencing this with their child. And how focused and appreciative one becomes with their family - cherishing them and loving the small, precious, simple moments that mean so much - like your child falling asleep in your arms.

Then there's also Zachary's great achievements. Just this weekend, he started using a spoon and was able to bring it to his mouth to feed himself. He did this for his whole feeding with some minimal assistance from mom. He can say 'mama', bring his hands together, play with toys and does great with 'tummy time'. Smiles and laughter are a regular blessing from him everyday. I'm convinced that one of God's main gifts to mankind is the laughter and smiles of a baby - there's nothing better.

Here's a picture of 'Santa Zach' during his first Christmas.

Pictures of Zachary

2008-01-07T21:19:00.000-07:00

The Charlan Christmas Chronicle 2007

2007-12-23T22:50:00.000-07:00