New Travel Channel series, "Making Monsters"

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

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

‘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

Read the story here

Update

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

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

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

Zach's a Mac

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

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~