10 days to GO!

I have finally locked in what I am going to be shooting on 10.10.10. and I am so excited for this day to finally get here. I am such a sucker for a community driven creative undertaking of this scope. A GLOBAL project. Are you kidding me... The guys behind this film project are so inspiring, and ambitious, and thinking about this date getting closer I can't imagine how they must be feeling.

I got so excited for One Day On Earth that I wanted to shoot some of my project on actual film. So I took a plunge and finally bought myself a camera that I have always wanted the other day. It arrives soon. I keep watching out the front window for the brown truck like a psycho. I haven't shot any super 8 footage in years, but always love how the footage comes out. There is a great place in LA that does the processing and the transfer to media files, so I can edit with the clips easily. So I finally did it. I found this gorgeous sucker online that had been totally refurbished and new batteries built for it. I picked out the stocks that I wanted and ordered my film last night.



I am going to shoot with the Canon 7D and the Beaulieu 4008 ZMII. So, I am all geared up and ready to shoot on 10.10.10.

Are you ready? What are you going to shoot that day? How many people that read here are going to do this? HERE is my profile on One Day On Earth. friend request me and I can see what you all submit.

If you were still wondering what ONe Day On Earth was all about, this film above they put together explains it so well. You still have 10 days to get involved. If you know of anyone in your life that shoots, or that can tell a story with their camera, please make sure they know about this project.

Get excited.

10 days to go.

All the Love in the Universe ~ Me

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Handmaking Some Fun

Yesterday, the charity album we have all been fussing about "Do Fun Stuff" got some sweet love from Ree over at THE PIONEER WOMAN. How awesome! Right?! Every time the album is pushed into the light by a new blogger it climbs the charts and stays in the top ten for awhile-- and that gives this album the chance to be discovered by brand new people just cruising around for music. Love it. I have run out of ways to say thank you because I have been saying it so much for all the generosity this blogging community has shown this project. This experience has truly changed me. I hope to be able to give some kind of concrete progress report in the coming weeks.

I wanted to point out the picture above. That is a shot from Cole's work table here at home, she has been handmaking albums to sell when it gets closer to the holidays. We got a lot of requests for a physical copy of the album so people can give them as gifts to little ones and friends. For you readers that do not have kids, it is the "super cool aunt/uncle" gift to give of the year! Kids will love you. We will set up an ETSY shop and make these available for stocking stuffers when we have enough ready for you. She did such a great job and took my lame explanation and turned it into this little awesome piece of art. It will come with some other fun stuff for the kids, I love it. The whole thing turned out awesome. Each one takes her a couple hours to make, so we will have to see how many get finished.

SO... just to give Cole an idea of how many she should be making, anyone here think they are going to be interested in one of these? They will be set at a higher price from the album on iTunes. BUT all profits will be shipped to PRISMS as well.

For you good people of Central Fl there will also be some available at the Rifle Paper Co. store when they have their grand opening. Anna Bond of Rifle Paper of course is the talent that created the album art for "Do Fun Stuff", and speaking of Rifle Paper have you all seen these?

Their halloween cards? Click RIGHT HERE to get yours. Anna always does such awesome work.



I also wanted to update to the folks that sent us your address for the August 30th posts. The first wave of heroes. Your thank you project is still under construction, and we will be sending you them out as soon as they are ready. It will be worth the wait. Trust me. You will be happy :)

If you somehow have no idea what I am talking about at all, and just found this blog. Please take a look at the information below. Click on the CAUSE, and read about The CHARITY. Get yourself an album today. Seriously please get it. I'm not too proud to beg when it comes to this.



All the Love in the Universe ~ Me

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Two and a Half Minutes With Tessa - episode one

Today I am introducing a brand new video series "Two and a Half Minutes With Tessa" it's going to be a new regular thing around here on the blog.

Tuesdays - roughly around 9AM. Every Tuesday. For an entire year.

If you have read here long you know how much I love making a series, documenting a journey is my favorite thing to do. This time I was inspired by a simple unedited clip that Cole shot with this new little camera I had bought her. She put it on one of those little bendy attach to anything tripods and shot Tessa at the end of breakfast for two and a half minutes and just let her do her thing. It was amazing to me. I mean I watched it 50 times, but I am her Dad so of course I was amazed by her wielding her cuteness power.... Her funny messed up bedhead, and her new monster jammies, and her little head tilt, trying to lick all the oatmeal off her face, her new voice, and she has TEN teeth now. TEN!

Tessa has been on the verge of getting chatty for weeks it seems, she will copy sounds, mimic a phrase, she is gearing up to be a real chatterbox we can tell, so after Cole showed me this clip-- I thought it would be really interesting to film Tessa for two and a half minutes uninterrupted each week for a year and see the changes. Watch the personality come out. It says in the tagline of this blog: Stories of growing. So that is that.

Tessa is 15 months old tomorrow. And here we go...

I also wanted to share another video that Cole and I watched in total amazement and smiles last night. How cool is this family? And who just thinks: "I'm going to send some stuff to space."-- "NO, it will freeze!"-- "Nah! We will just throw some pocket handwarmers in the craft and it will be fine." I love how simple and matter of fact their approach to everything is. Think about how their kids view "space" now compared to the kids that grew up watching the shuttle program roll out. AND It was refreshing to see a father do something with his kids and a weather balloon that wasn't desperate and creepy. Seriously if I was a TV producer I would get this family on TV doing more of this stuff. The space program goes on... and it's in Brooklyn.


found via (Your Ill-fitting Overcoat

All the Love in the Universe ~ Me

P.S. I started filming the Do What You Love series a little later than I thought we would get started, but life is life and things change, and I just wanted you to know it is coming soon :)

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Sometimes You Have to stop Believing The Lie

You see this guy? The one with his hands in the garbage can? That's me when I was a younger man. I am waiting for the director to yell "Rolling" before I throw a couple heaping handfuls of fiddler crabs onto my friend Greg Rivera who's lying on the ground in the water playing the "dead guy" under the sheet. I was the Prop Master on this film, and in this particular scene it was my job to cover the "dead guy" in crabs right before the scene started, so when the camera dollied by and panned past the body, it looked as if the crabs had come a calling, and just started their feasting. Don't ask how I had acquired 500 fiddler crabs, and believe me, 500 crabs go fast. And in hindsight had I known we would be doing so many takes that morning, I would have got more, by the end of the morning I was scrambling between takes collecting them back into the can so we didn't run out. So many insane little jobs throughout a film.

I started to really miss doing this movie stuff a couple months ago, the idea pops back into my head from time to time, but it is so easily dismissed usually... lately It has not been going away. And I finally figured out why. It's because of some of the emails and comments I get from this blog.

Let me explain...

I spent my entire young life dreaming of being one thing. When people asked me what i wanted to be it was always: "an actor" and I lived my life to be an actor. I did the theater thing, competitions, and plays, and summer theater programs, and people would tell me, "Oh you're going to make it." and I thought how exciting! I'm going to make it. I had so much support from friends and teachers. At the same time I grew up in a house that liked to remind me constantly, that people that want to be actors, don't really ever make it. And I would be a fool to think I could just go and do this. Back up plans. I had to have back-up plans. You can't just think you're going to be an actor. I was a real loud mouth chest pounder of a teenager. So I would erupt at my parents with those dramatic. "YOU DON"T KNOW ANYTHING" speeches and storm out of the house. The problem was, that I was afraid inside. The truth was I did not have much confidence in my ability, and as much as I won competitions and received compliments. I was filled with self doubt, and I had screamed and yelled about acting being my life so much at my Mom and Dad, that I was now terrified of failing and at them being right, I did not want them to see me try and fail, and then have to listen to the "I told you so" lectures. I was so angry on the inside that I did not have their support and belief that I let that anger become more important than my dream. How stupid right? Teenagers. So I just simply pretended to grow out of this dream, and it made me bitter and cold.

Over time, I would say things like: "Acting was fun when I was young, but I just want to work on films, that is way more exciting to me." and so I would work on films, and make films with my friends, and I was going to be a film guy. When I would bump into people that knew me and they would ask me if I ever pursued an acting career I would say, "I grew out of that." I think I started to believe that lie. I found my way into the Art Dept and despite having skill in set decorating, I kept pulling toward the job as prop master. The reason being, it is the one job in the Art Dept. that gets you close to camera, and the director, and the actors. I was right there in the heart of the action. In the back of my head my plan was to stay close to the camera, and eventually someone would notice me. I loved what I was doing, but I wasn't being honest with myself. I was afraid of failing as an actor and making my parents right, so I just pretended that I really didn't want to do that anyway. Eventually someone did notice me, and I was given the chance to be in a film. A tiny little scene in a movie, but it was a huge deal to me, I had achieved a wish of mine, to one day be able to purchase a movie ticket to a film that I was in, and go sit down and see myself on the big screen. So that was it. I sat on that one small accomplishment. It froze me. I could say I had this victory.

Instead of using that opportunity as momentum, I used it as a step down. I would say:"Well that was fun, but I don't really want to be an actor." and I declined my SAG card and signed off on a Taft Hartley instead, and I just kept working as a crew member on films. I started to believe the lie, and eventually I forgot that it was a lie at all. I convinced myself that I didn't want to be an actor so much that just recently when I saw this picture of me, throwing crabs on a "dead body" I thought, I want to work on films again. That isn't true at all. I want to be in front of the camera again. I want to stop being a chicken shit and pretending that this dream doesn't live inside me. I realized that this blog is what made all of this resurface in me. People say things here about being inspired to chase down dreams and make them real, and I realized that the one thing that I really wanted to be, I had squashed down into my belly and lied to myself.

I want to be an actor.

There I said it. It feels good to say it. I'm going to stop being afraid of it now.

That is all.

All the Love in the Universe ~ Me

P.S. I thought it was important to say that when I read this post to Cole she said: "Are you sure you want to publish that?" and I said, "YEAH! Why?" and she said: "Well, because now you have to be an actor." I didn't write this so that i could become an actor, I wrote it so that I could be honest with myself. I am fine if I never act ever again, but I wasn't fine with pretending that I thought it was a stupid dream. There are no stupid dreams.

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When She Woke Up Today

It's a really cloudy day today, and so there was a load of diffused light coming in through the windows that Cole just cleaned, and as a result it has made our house 10x brighter. Cole keeps admiring her work saying, "it's like we just got HD TV installed in all our windows." Funny we just figured out, that we have not washed our windows in over 2 years. We were both just like, "Oh, soooo we have to do that too? Add it to the list of things to be sure to clean all the time." Shameful. Lesson learned and now I am loving the extra layer of light that is coming through these past couple days. Clean the windows... who knew :)

In the morning, Tessa loves to stand on the top of the couch and lean against the wall and sway back and forth like a bear scratching its back on a tree. She also loves to mess her hair up when you take her picture now. She gives it a good messy shake whenever she actually looks into the camera.

She is getting great at the staring off looking disinterested thing.

All the Love in the Universe ~ Me

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Around the House by: Cole

More from the phonetographer. If you are brand new around here, I wanted to say a specific hi :) just for you. And let you know that lately by the time friday roles around Cole has a whole slew of great pictures sitting on her phone from the week. So i started putting these collections together, and well eventually Cole is just going to have her own space attached to this blog. I started that terrible process of figuring out how and when I am going to finally get this blog polished up and bells and whistles added.

I have been so busy with other things lately, that my camera almost never leaves the bag, so I am really appreciative that Cole captures so much of our day to day life on her phone. She is getting really sneaky about it too. Most of the time I think she is texting someone, or I never even see her with the phone, like when I am fighting falling asleep in her lap trying to stay awake through the Daily Show. Oh, and that middle picture, the one next to me grilling giant pork steaks, that's Tessa trying to get into Cole's shirt. She attacks from both fronts.

I started looking around at cameras for her, and I keep coming back to the iPhone 4. How funny. Why mess with a good thing.

*That great Tessa Tangerine bag was sent to us by Kim Fox when Tessa was born. Kim is wife to Steve Foxbury who wrote the song "Nothing" on "Do Fun Stuff" :) Great friends the both of them.

I Hope everyone has a great weekend, and next week I finally start to get shooting on the "Do What You Love" series for the Gap, and I'm so very excited to get that going. A little later then I had planned, but it worked out for the best as the album launch got my full attention. Have you bought this album yet? I noticed that the ratings and reviews stopped over on iTunes. That's a shame. This isn't a guilt trip at all. I just can't believe how sad I feel right now. SO sad I can't even write anything else. Except for THIS LINK to iTunes so you can buy the album if you forgot to, and leave a rating and review if you have been enjoying the tunes all week. Thanks so much for another great week, so many new people DISCOVERED the album, learned a little about SMS, and I hope the word keeps spreading, and this charity takes on a life of its own. The word of mouth monster comes to life.

Oh and I had to leave you with this. If you want to read a really gorgeous piece of writing, Rebecca Woolf just crushed me with THIS ONE, I have received so many emails about not writing about LB any longer, and how much they will miss him, and so now I know how it feels after reading this last post about Archer.

All the Love in the Universe ~ Me

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What's in the Box?

Cole and I have been discussing pen pals, and how great snail mail pen pals are for little kids to have from far away lands, broader world view, new connections, and then I think I must of trailed off into a fuzzy trance, because I started thinking about all the cool stuff you could make your pen pal send you if they lived somewhere awesome like some little town in Belgium or something. So then I was like forget the kids, I want a pen pal for myself. I am a HUGE sucker for well thought out care packages, a nice mix of indulgence and necessity items, and some personal crafty touch to make you feel totally special and connected. Cole is amazing at putting these kinds of things together. Sometimes when we get close to being out of toothpaste or deodorant, I wish she would just mail me a care package with new toothbrushes and minty paste, along with some beef jerky, and mystery Munny toys, a mixtape, and one of her handmade cards. She makes the best cards.

So I was like...

A Care Package Exchange! From anywhere in the world!!! To the drawing board.

So I started wishing that there was a website that I could go to, you would build a profile, plug in interests, from food and fashion, to books and cinema, anything, everything.

Next you would select the country you were interested in, and then select a city, let's say Tokyo, Japan.

Then you would enter a dollar amount you would spend on this care package exchange.

You would hit search, and just like a dating site, it would pair you up with a list of people to choose from that had similar interests and tastes. You could snoop around. Decide who you thought was a good match, and then say hi. exchange some letters, build up a little trust, feel each other out, small talk.

Whoever invents this site needs to figure out how to make it so you can't get ripped off, and there would have to be an understanding that you might hate everything this person sends you, and you can't do a thing about it, and so no complaining crybabies allowed.

I wouldn't want to ask for specific things. It would take the fun out of it. The mystery of it would be amazing. They have your list of interests you dig, and you have theirs, and you would see how that translates into goods available in their neck of the woods.

There has to be some little genius out there willing to steal this idea and make this site so I can use it when I want. Just let me know when you do, and I will sign right up.

Where would you want a care package from if you could get something from anywhere in the world?

I am such a sucker for all things Japan, but I think I would pick a place like Brussels, or somewhere in Finland. Cole agrees with Finland because of sites like THIS, And Finland for me, because THIS stuff is from there, what an awesome website that is. Geez.

Where would you pick?

* AND yes, I am aware that there are a ton of really great pen pal sites out there, but none that are designed just to trade stuff.

All the Love in the Universe ~ Me

P.S. Speaking of snail mail. For everyone that sent along your address for the 30th posts, don't start staring at your mail box yet. We are still waiting for a little something to be finished. Hang in there.

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Playing in the Big Bed

Tessa loves our bed. It is her preferred spot to play. She piles the pillows up in the middle, and then face plants into them, and laughs, and laughs, and laughs. I have never seen her get bored of this.

This laughing fit is courtesy of Cole making Tessa piss her pants laughing simply by shaking her hair around.

All the Love in the Universe~ Me

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Talkin About Num-Nums

Cole has been dressing extraordinarily hot lately for the salon, so when she emerges from the back of the house to leave for work, and even still when she is coming home from the end of her day, I'm all "damn girl!" Her getting ready is always like a backwards tease show. She pops out of the back in stages of getting ready, first in just her panties, next some stage of a top, 3 bottom changes later, and she is finally done, bouncing around the house all dressed up, smiling swagger, pushing food into her backpack, grabs her bike lock, and then POOF she is out the door. So of course I am always the same kind of "damn girl" excited to see her when she gets home from work. She looks incredible. The thing about her putting together a cute outfit and looking extra lit-up and sexy, is that it just makes me want to take that outfit off of her. Hilarious effect of the "hot" outfit: "You look so good, I can't wait to take this off of you." It sort of makes sense.

So Cole walks in from work, and I'm staring at my beautiful wife, and all of the thoughts from the morning come washing back to the front of my head, and she sits down on the floor, and before there can even be a follow up to the "hi honey, how was your day?" routine... Tessa makes a bee line waddle for Cole with her little arms outstretched, and I am thinking awww she wants a hug, she missed you, but then she grabs the front of Cole's shirt and bra with both her pudgy little hands, and rips her top down, stands back and takes a good hard look at my wife's breasts and says: "MMMMMmmm" leans down, and then shoves her face onto a boob. Tessa is just standing there, all hunched over, her little diapered butt wagging back and forth like a piglet happily feeding, and Cole is like, "I think I'm done breast feeding."

Just like that.

And I'm all like: "Really?"

she confirms, "Yeah, I'm done."

...and of course in my head I'm immediately thinking, SOOO how much longer before I get to have those back for me?!

I know-- Geez, I'm terrible. I'm selfish right? Cole finally hits a breaking point and wants her body back from the baby, and I'm trying to figure out how long before her breasts stop being referred to as "num-nums." I mean honestly, it isn't a sexy thought at all. In fact hearing them called "num-nums" can kill any urge. Let's try a little experiment. Allow me to insert "num-nums" into this super lame steamy piece of erotica that I found on the internet so we can really see how ridiculous this sounds... His other hand strokes my face, then tracks on downwards, coasting over my throat, and then my shoulder, before sweeping inwards to cup one of my num-nums, the action both natural and boldly male and possessive. Almost immediately, he begins to strum my num-num through the thin silky top, and my light, lacy bra. haha (that shit embarrasses me) Did that steam things up, or what? "Cole, come here baby, I just want to get on your num-nums!"

So now, ever since I have heard the early rumblings of this boob liberation from Tessa, and I see the moves being made to stop breast feeding despite the insistent protesting from the baby girl, all I keep thinking about is how long do I need to wait before I go there? When is anything I could possibly think of to do to a boob, going to be sensual in anyway after watching Tessa breast feed for the last 15 months? I mean this baby has a lot of teeth now, and over the last few months there are always these startling unsettling shrieks from Cole out of the blue: "OWWW, OUCH!! TESSA! NOO!" and Tessa will sort of look back at me all boob drunk and toothy smiled, like: "What, did I do that?"

When Tessa was first born and The Littlest Buddy would see Cole breast feeding her, he would sort of stand there, squinty eyes, go into a trance, his little mouth hanging open, like "WTF lady?!" point to his chest and say "Mine." And I was like, no buddy, "MINE!"

Boobs were taken off the list of things I put my mouth on. I was laying in bed the other night considering this list carefully, and deciding when is it okay to erase that line I scratched through it. I don't want to ask... How terribly unsexy. I have a feeling it will just happen one of these days. Enough time will pass, and I will stop seeing bottles when I take Cole's shirt off. I mean the only time I had an invitation to her breasts was when we were at a party, and Cole had forgot her breast pump, and her boobs were swelling and aching, and she asked me to help her out in the bathroom so we could stay longer. She was all like, "just spit it out in the sink. COME ON, they hurt!"

We went home early from the party that night.

I think there might have been a point when Cole was worried I wouldn't think she was sexy any longer in the boob dept. and I could tell it bothered her a little. I would be a liar if I said, "No way honey, your num-nums are so awesome, and I get super turned on when I see them." That is an engine I had to shut down for a little while because I feel incredibly insensitive trying to get some time with them. So I just cut myself off. I am just waiting it out. Waiting for that green light, the all clear, so I can flip the engine back on. Cole has a posture to her when she is ready for everyone to stop touching her by the end of the day, and I try as hard as I can to respect that. So for now, there is just no walking up behind her in the kitchen while she is doing dishes, and hitting her with a "HAND BRA!"

So here I am. Feeling kind of guilty that Cole has started weaning, because I gotta tell you, I'm pretty excited about flying with all four engines again.

All the Love in the Universe ~ Me

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Gasp!

What a morning...

I wanted to direct your attention to see a preview of the physical copy of Do Fun Stuff that Cole has been making with the help of Rifle Paper Co and Mama's Sauce Print Shop. After reaching out to the blogging community for months I had asked for help from everyone that I read to please help, and I was shocked last week, when I received a DM from Heather Armstrong on twitter to please send a physical copy of the CD for her to photograph. This physical copy of the CD of course did not exist, but I said enthusiastically "SURE! we can do that!" and Cole set to work on it. We have been planning to make a limited number of these handmade cases for the CD to release when it gets closer to Christmas, and Cole now had just a couple of days to get the vision into physical form to send off. Mama's Sauce worked late to get the printing done of Anna Bond's adorable little monster we now call "Embie." I will be posting some other pics of the finished piece later down the road.

Please take a second and head over to Dooce and take a look HERE. What an incredible surprise today. Dooce has joined in the collective voice that was assembled here to help this cause, and to all of you, again I cannot say thank you enough for this effort.

And if you have not had the chance to do so, please consider getting a copy of the album on iTunes today, the album has started to head the wrong way down the charts after the first big push after owning the top 3 spots for the first week. Here is theLINK.

I am still trying to wrap my head around the support this project has received, and wish that I could appropriately convey what it means to the SMS community as a whole. On behalf of PRISMS and all of the SMS families looking for answers this has been so appreciated.

All the Love in the Universe ~ Us

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The Baby Hunt is On!

We are looking for Expectant Mothers with the Due date of 10.10.10. or close to that date.

How many people remember me talking about the film One Day On Earth? Seriously?! Geez, that isn't very many of you... well here is the original POST, please get caught up and come on back and let's get busy on this film.

For the lazies who don't want to read the other post, here is the brief:

I don't know how a person can watch that trailer and not get inspired to pick up a camera on 10.10.10. and share their perspective. It's an incredible project. No? Goosebumps every time I watch that trailer. I'm going to go watch it again.

Okay, I'm back.

As 10.10.10. gets a little closer, the creators of the One Day o Earth project have been able to reveal some of the ambitious steps they have been taking behind the scenes to get the most extensive coverage so this project truly has a global perspective. They have reached out and met with the United Nations to ship out cameras to aid workers and volunteers from around the world to film what they are seeing, what they are immersed in, the joys, the strife, all of it. They have united over 5,000 participants so far to take part in this massive undertaking, to find out who we are. Goosebumps again, just thinking about the end result.

I have been lucky enough to stay in contact with creators of this film project along the way, and this past weekend they asked me for a little help to ensure that they get one important event that is vital to them in telling the story of the human condition.

A child being born. The birth story.

So this is where I make an attempt to get things organized to make sure that happens. Let me lay it out and see what we can do here for them.

What I am attempting to do is organize a One Day On Earth group for filmmakers interested in capturing the miracle of birth on 10.10.10 all in one place. Now when I say "filmmaker" don't get intimidated. You don't have to have a ton of gear and a giant resume to participate, you just need to have the desire to tell this story, the want to capture the emotions of the first seconds of bonds forming, but you do need to own a camera of some kind. All you need to do is...

GO HERE and sign up as a filmmaker for One Day On Earth

the next step after you have become a participant, is to JOIN THIS BIRTH GROUP.

Once we have a group that has identified themselves as being interested in this task, I will be doing my best to pair interested parties with filmmakers. That is the second step.

First- I find the filmmakers.

Second- I find the 10.10.10. expectant mothers.

Sounds easy enough... right?!

I need to find as many expectant mothers with the due date of 10.10.10. or any time close to that date, that would be interested in having their birth captured for this film project. The challenge here is tremendous, the timing of it all is never a guarantee, plus the decision to share something so very intimate with the world is not something to take lightly. These are some of the most raw and gorgeous seconds of life to witness, and it would be hard to tell the human story without this element.

So if you know of anyone with this due date, if you have this due date, if you are a member to a birth community like The Bump, know midwives, doulas, OB-GYNs, if you are a Midwife, a Doula, an OB-GYN, and can reach out to expectant mothers with this due date (or close), please reach out to me. I need to find these Mama-to-bes. Where are they? Where are you? It does not matter what part of the world you are reading this from. If you are interested, we will find someone to film this event.

If you know of any expectant mothers with the due date of 10.10.10. or anytime close to that date, please email me HERE! If you know of anyone just pass this post along, or reach out to them and get them in touch with me.

Let me be clear, this is not United States specific, ANY part of the world you might be reading this from.

This is the start. This is the gear up to 10.10.10. I had no idea what I would personally decide to capture on 10.10.10. for the One Day on Earth film. Now I am fixed on this one mission. Even if I do not find someone close to me to film, I want to help this production realize this essential part of the human story.

Spread the word, ask around, GET SIGNED UP.

And for anyone who reads this, that is not up for the task of child birth, but you have a clear vision of what you would want to share, get over to One Day On Earth and please stop being a big baby chicken that thinks you don't have anything important to say, and sign up. Participate in this project. Go watch that trailer again, and think about what you would want to include in this story. Its a brutal gorgeous terrible world, filled with so much joy and love and fear, all smacking around in a whirling swirl trying to find balance. When all of these stories stop spinning, what will we know about ourselves, about others, broaden the world view, and participate in this film project.

Thank you in advance for any help in achieving this goal.

All the Love in the Universe~ Me

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Balloon Crusher

And sometimes you just have to spend your afternoon relentlessly trying to crush a balloon with your body weight...

And when that balloon just won't pop...

The pout face appears until dinner time.



All the Love in the Universe ~ Me


P.S. The comment section from yesterdays post was pretty intense, Cole and I stayed up late reading them all over and talking a ton about "more." Your thoughts were absolutely appreciated on this one. I am glad I put it out there.

Don't forget if you have not bought this album, spread the word, or forced your bestest closest friends to buy this album too, then this weekend is your chance to be a hero. Let's get this thing back in the top ten this weekend. Thanks in advance :)

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More

Both Cole and I want another child.

Just saying that out loud to one another is enough at first. We are satisfied that we are on the same page. There are no discussions about the why. It's a relief knowing that we want the same thing. Our number was the same. Three.

I watched Cole physically take her body back after having Tessa. Chemically, it is out of her control still-- it does what it wants. We both have had an interesting time adjusting to the changes. She is still about 9 or 10 months away from being totally back to "normal." She still does not feel like the self that she was when we met. She cries more at the television, she takes my jokes the wrong way, little things, nothing we both don't see and laugh through when the calm from clarity sets in. There was a period where our conversations had become minefields, and the steps were taken slow and steady. Things are fluid again. Sort of. Now when we have time to actually talk, there are days when it feels more like that carefree spin from Julie Andrews in Sound of Music. I am still not used to "sensitive" Cole.

Tessa is 14 months old. The discussions begin on what is and isn't, a good age between children. We list siblings that we know that are close and that are the bestest of friends. I keep saying that they have to be best friends. They have to be. I am already dooming that friendship with pressure. I have to remember not to do that. Cole will make sure that I don't. Cole make sure that I don't.

The reasons for wanting another child begin to surface. Questions are being asked. Conditions are being set. A list of "first we have to's" begins: We have to have a bigger car, our savings have to swell, We have to renovate the house, We have to have the Midwife and Doula paid for upfront before we even start to try to have another baby.

So I put my head down and begin figuring out how to make all of that happen... in the shortest amount of time possible... as soon as possible. I feel urgency now when I book a job. The money is spent already before I even take it. This can go towards the car, and if I take this job it will pay for the Midwife.

I watch Cole fill her days up at the salon, she is booked solid now on the days she works. She could easily work more, if we did not have so much going on here, at the house. Her career is taking off. What will another baby do to that progress? Is it fair? It doesn't seem fair.

So why? Why do we want 3?

Lately my reasons have done nothing but create paths to new scenarios I hadn't considered, and then in the end I am left thinking that perhaps we don't need to be thinking about more. Is another baby fair to LB, is not having another fair to Tessa. I picture myself an old broken man, Cole trying to take care of both me and LB, and Tessa trying to live her own life, and I hate thinking of her alone to have to deal with all of us. I want her to have help, someone that she can bounce things off of: "Dad is such a pain in the ass, and Mom is the only one that can get him to take his pills and get him to stop eating bacon, and she needs help with LB, what should we do?" I want her to be able to say "we."

BUT

What if we have another and they turn wild, and they do not have the bonds we are hoping for, what if Tessa is wild, and just wants to be far. We have no control over any of this. None of it. So I am deep in the middle of the what ifs and I am drowning in them. All of this means it isn't time and it took writing this to figure that out. Someone this scared and confused has no business thinking about more.

Somewhere down the line I came up with that number. And so I want it for my family. I know where it comes from and the why. I felt like I didn't have anyone as a kid. My sister and I made our parents strangers, and instead of bonding with one another, we didn't speak for years at a time. So I have always felt alone, and I think that somewhere along the way I convinced myself if I had another brother or sister, that maybe we would have pulled the family together. Or maybe we would have never fallen apart in the first place. None of this is rational. It is that carry over of dumb logic that was conceived in a child's head but is dreamt about so hard and so often that it is vivid and bright, and over the years has turned into a want for when I am building my own family.

I look at the two kids on the couch. Look at how comfortable that looks. That's two content kiddos right there in that picture. I wonder where that third baby will sit? Is there room? What? Now we need a bigger car AND a bigger couch? Now I see a new picture. Someone is red faced, trying to squeeze in a spot that the other one has, they fight to sit next to LB, Now all of the sudden this picture is a slap fight, and full of tears, it is the picture we save for when they are older to embarrass them in front of their friends. But then I think, LB isn't with us all of the time? Who is Tessa going to play with? So now she has to just sit there by herself? It's just a picture of two kids sitting on a couch! Why am I getting crazy looking at this picture?!

We get these numbers in our heads. It has always been three for me. I wonder how people settle on their numbers. Why just one? Why seven? Are their good reasons? Watch CNN too long and I wonder how anyone can justify having a baby right now. When you said three did your partner just say sure? Did you reason it out so it was all cool, or did you just do it because it felt normal? Have you ever stared at a picture of two and thought to yourself, I'm going to ruin this if I have another?

Oh boy. Now I have no idea what I think.

All the Love in the Universe ~ Me

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SMS Stories: You Gave Me a Kiss

I wanted to give you all the chance to hear some more voices within the SMS community. And so I will be posting stories from parents who chose to share a glimpse of their life with you all on Wed afternoons as long as I keep getting them in an effort to keep raising the awareness about SMS. Please embrace them and say hi if you get a chance.

This came to me from a family that are members on an SMS community message board that Cole is a member of. She put out a call for some thoughts to share, and this came in from Salli who has a little boy named Sam with SMS.

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You gave me a kiss last night
Spontaneous one at that...
It’s the first time you’ve done it
And now I know you can!

I wonder how much of your intelligence
Is prompted by us, and learned through routine
But that kiss on my cheek
Surely couldn’t have been?

You don’t need your boots anymore
They said this today
We get to buy you REAL shoes
Orthotics are impressed, they say

You’re trying so hard to talk this week
Saying BAH, and UH, at request
You’re communicating in sentences
Your achievements are never at rest!

Nearly every week you surprise me
By doing something new
I bet a parent of a typical child
Doesn’t get the excitement we do....

I know sometimes you get confused
And I can’t help you much
You cry and stamp and tap your head
And run away from my touch
but

I can’t wait to see what each week brings
To know my next proud day
All the confusion gets wiped all clean
And we start afresh, OUR way!

-S

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This Monster Has a Name

So I had no idea picking a name for the monster was going to be such a difficult decision. If it was left just up to me I would have named him what I always name any fictional character that makes me laugh, "Frankie Jenkins." That name has stuck with me for years. Out of Oliver Stone's whole 8 hour JFK epic, the thing that stayed with me the most was the scene where Tommy Lee Jones is being interrogated and pretends to call out to his butler "Fraaaaankieeee." hilarious and genius little character building moment in that film.

We wanted a name that LB could actually say, so we went through the list with him to see if he would just ring one of these names out clearly. I thought for sure it was going to be "Uncle Monstahh" heavy emphasis on the ahhh at the end. Especially since The Littlest Buddy has taken to calling Tessa "Uncle Baby." He loves his "Uncle Baby" haha makes me laugh every time he says it. When he comes home from school, "Hi, Uncle Baby."

Unfortunately, he could not say "Uncle Monstahh" I think it was just one too many Uncle's in his life.

So we moved down the long list of names we received (thank you to everyone that participated) and the one he totally nailed was "Embie." After saying "Embie" he let out his best monster "roar." We really liked the explanation that came with the name suggestion from Haley: "Naming is serious business, so I've been doing some serious thinking. I keep coming back to MB [for Monsterist Buddy]. BUT I like the idea of a name that is more than just initials. SO. What if his name was Embie, which is basically just MB, but spelled out phonetically."

So we have named him "Embie" and now LB growls at him and says "Embie." Perfect.

Thank you for all the name suggestions, some really funny stuff, also some really odd choices. I love that someone thought the monster just looked like a "Brad" to them. haha this monster looks like a "Brad." I'm not making fun in a asshole way, it's truly just funny to look at a growly toothy green monster eating an ice cream and think, "Brad." It was so simple I secretly wished that it would win. I have personally known some real life monsters named "Brad" so I get it.

ALBUM NEWS! Where are we ? We have been dropping and rising all over the top 20 the last few days. The lowest was 19 and by the end of the day we were back to #10, and then this morning hanging at #12. What this means to me, is that people are finding the album from your posts, digging it, and then buying it. A total WIN for SMS! This is all great news. There are still a couple posts coming soon that have a big reach that could possibly hurl "Do Fun Stuff"right back into the #1 spot. Which would be legendary to have an album promotion that is only fueled by bloggers, beat out records that have an entire marketing and publicity team behind it. It would certainly be one for the books. My fingers remain crossed that everything keeps going so smoothly.

I am going to post some more SMS stories here today, I chose not to post any up as the Labor Day weekend turned the blogosphere into a ghost town and I wanted these stories to be seen, so I am bringing them back today.

I am still getting a few emails asking what else can be done? Financially speaking if anyone has the want and the means, you can absolutely go HERE and make a larger donation to the SMS Fellowship. If you have bought the album but have not rated or reviewed it on iTunes, please do so HERE, the biggest thing of course is using your influence and share this story, this cause, and the music, and get more people on board to buy DO FUN STUFF

So that this blog isn't bogged down with just "Do Fun Stuff" posts and updates constantly, I am going to dedicate Wednesdays to the album for awhile as things continue to develop. More contests, and announcements are coming. And I have a feeling I am going to keep getting SMS stories to share.

I appreciate everyone that has stuck with this whole process and I hope it has been exciting to see all of this unfold as we all rolled this album out together.

To everyone that sent me an address, you will be getting a little something from us in the next few weeks, stay tuned :) And to Haley, thank you for the name-- LB loves "Embie" and as soon as Anna gets the posters done, you will have one, or both, I think she is making two? No idea. She is doing something awesome, and the BEST print shop on the planet is going to be printing them up.

All the Love in the Universe ~ Me

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Love Stories - Ashley & Ryan

It was so much fun showing you all the last wedding video that I made HERE, that I had to do it again after I finished this edit for Ashley & Ryan. As I get more and more interested in making video, and even more specifically, in the editing of video, I decided that I would make it a goal to book six weddings in the 2011 season and see how far I can take this making "love stories" thing. Just six. I don't think I could handle more than that. I am really loving making these, but again this has much to do with me being spoiled by the clients I have been lucky to have so far.

This one passed the test, as I showed it to Cole and she started to get emotional and got the cry eyes. I asked her: "Do you think they will like this?" and she gave me that sweet little smack on the shoulder and was like "duh! Look at him smile at her, how can someone not like that?"

As far as the challenge of being able to tell a good love story in just a few minutes, I knew I had it made the first time I saw the groom (Ryan), smile at his bride (Ashley), it was ridiculously sweet. Guys usually don't let that big of a smile loose that often, and this guy was not shy about being in love with her, not even around all his buddies and brother, he never played it off as no big deal, you could see this was a huge deal to him, and it was really cool to key in on it.

Ashley & Ryan were supposed to get married right at magic hour and it would have been amazing in this lake setting, but the Florida summer rolled off a late hard hitting storm that lasted a good couple hours, and dumped a serious amount of water on everything. it was interesting to watch how everyone held up under the stress of plans being screwed with by Mother Nature, how they rolled with things, seeing Ashley instantly calm down after a simple quick reassuring text message from Ryan. You could tell his words were soothing, in that really great way. Don't you just love that kind of calm? When your love can look at you and say, "this is all gong to be fine" and you know that it will.

Despite the soggy skies, they threw a great party and everyone in attendance was so bright you didn't notice the rain at all. Big smiles, happy families, really supportive friends and buddies, this was a great group of people that were genuinely bummed when it was all over. I think this group had another few hours of dancing and partying in them. I was really happy I got to be a part of this one, and that I met Ashley & Ryan.

So here they are...

This gorgeous song is called 'Nannerl" and it is by: Julius Airwave, and you can buy it right HERE for cheap.

All the Love in the Universe ~ Me

P.S ALBUM UPDATE- Have you been on the fence about buying the charity album? You're the kind of person who needs a review? Well the first official review of Do Fun Stuff is in. Please check it out HERE.

I will be posting a big Do Fun Stuff update tomorrow and let everyone know how things are going, and what is next. I will also be continuing to share SMS stories here in this space. I didn't want to put them up over the holiday weekend when everyone had their computers off. The album dropped from #2 to #19 in the iTunes charts over the weekend. if you know of anyone that needs to hear about this thing, or that has not bought it yet, but will totally love it, please consider doing a little arm twisting this week and getting this album moving back the other direction in the charts. If you are new here and have no idea what I am talking about. Start HERE. Don't let this album die.

if you do know what I am talking about and you still haven't bought this album yet. I went and made it easy for you, Just please click this iTunes LINK and you are one click away from buying this album. I said please.

#dofunstuff

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A Breather

Some scenes from around the house this week from Cole. I think it is pretty obvious that I was in another world this week, and so Cole stayed busy with the kids and soaking in the summer weather. Most of the humidity took a hike and the weather was... pleasant? I wouldn't know-- I was hitting refresh on my computer like a psycho every 5 minutes around the clock. The picture of "Do Fun Stuff" in chalk was discovered the morning of the launch, Cole had written it on a few things around the house for me to find that morning. I told her she had to include it in this weeks pictures, because I just love that she does that stuff for me, and I am kind of bossy. As for the one on the bottom left-- sometimes you gotta high five a foot :)

Oh and I stayed up all night finishing a wedding album for a friend, and I kept humming a song, and it took me awhile before I realized that I was doing it pretty loud, and I felt crazy, and so I decided I would just sing it. Why not, right? It actually took me a few passes at the chorus before I realized why this song was in my head. It was the song Cole and I danced to at our wedding, and while I was sitting staring at my computer screen at this great couple being all sick and in love while I worked on their photo album, it made me remember how sick and in love I am with Cole, and that I haven't mentioned that to her lately. So there you go. I posted the video of the song below. Artists name is Rebecca Zapen and she lives in Jaksonville, FL and was a friend of the fellow RickoLus who did two of the songs on Do Fun Stuff and I am kicking myself for not asking her for a tune for Vol. 1. I hope she will be up for Vol. 2 :)



Thanks for hanging in there all week with all the Do Fun Stuff noise. I will be making multiple posts today sharing the rest of the SMS stories I received.

All the Love in the Universe ~ Us

P.S. The Monster naming is a real serious deal around here, heavy discussions need to take place. There are a few really strong front runners, so Cole and I are going to need the long weekend to decide on it. If you want to get in on the monster naming contest, head to THIS post and drop in a name suggestion for our ice cream loving green monster friend, and if we pick your name, you win yourself a limited run poster for "Do Fun Stuff" from Anna over at Rifle Paper Co.

*One last desperate plea to get your butts over to iTunes and when you are done buying this album PLEASE rate and leave a review. I can't stress how important this is. Keep that album active. We dropped to #3 so I know sales are slipping. There are a few really nice surprises from some new heroes to the cause next week. Exciting things. All of it.

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SMS Stories: The End (and beginning) of a Long Journey

I wanted to give you all the chance this week to hear from some voices within the SMS community. And so I will be posting stories from parents who chose to share a glimpse of their life with you all. Please embrace them and say hi. I'm serious. Just say hi and a little of your love to know that they are being heard.

This story is from Percy. He serves on the national PRISMS board. I have never met Percy before, but reading his piece opened my eyes to a whole other side of SMS that we have not had to deal with in anyway so far. It adds new perspective on Smith Magenis as a whole. It is so easy to glide over a list of characteristics and not make the association of how each child diagnosed is so case specific and different from the rest. Many of the problems emerge with age, so in many ways while you do your best to stay ahead of the behaviors there is still an element of time and growth to get through before you know what you're up against. So as we might feel bummed about verbal delays and sleep disturbances now, another family might have a completely separate set of worries and problems to navigate. Reading his story about Jacqueline was a huge wake up call for me about my own attitude. Thanks for sharing this today.

******************************************************************************

Our daughter Jacqueline is now 19 1/2 and it has been quite a ride! She was not diagnosed with SMS until the age of 13 1/2 when she was finally genetically tested which verified SMS after being classified in dozens of different ways during her developmental years. It was difficult during those times not knowing why, how or what was causing all her behavior and developmental issues and going from one diagnosis and "treatment" to another.

It seemed like one day she would be the star and the next the villain! It was enough of a struggle with the behavioral issues but the medical issues were the most challenging. We have battled seizures from the beginning, scoliosis and related surgeries on her back coupled with a low immune system which caused staff infections at various hospitals every step of the way. One stretch in the hospital included 50 straight days, weeks of which were spent in traction and a halo, along with complete hardware replacement in her back to correct a previous spinal corrective procedure. Upon her return home she continued to battle the staff with a pic line and IV antibiotics for weeks and weeks. She will probably ALWAYS be on oral antibiotics going forward to prevent any relapse.

Through all this Jacqueline has always been an amazing patient. She seems to be almost immune to pain and cherishes the opportunity to see doctors, nurses, staff, etc. because it is an opportunity to see an old friend or make a new one. She is so caring and loving and NEVER forgets a persons name or face which is a constant amazement to all who know her. No matter how difficult she can be to mom and dad she is generally a joy for others to be around.

The best news for those of you with younger SMS kids is that they do actually grow up! Sleep issues have become virtually non-existent. We have to watch her weight and diet and she continues to be enrolled at the local high school until age 21. She loves school, the kids, teachers, etc. Beginning last spring, through efforts of the school she began working 1/2 days in addition to classes at VIP Industries, a local sheltered workshop. This carried over to full time over the summer and has gone back to 1/2 days as school has begun again.

This transition for our daughter has been truly amazing. During the summer she would leave the house for work around 8 and return at 4 with transportation provided by the employer. She is performing meaningful work in a quasi industrial setting AND getting paid. In addition she interacts with fellow workers, develops a sense of self worth and esteem and is simply growing up!

In many ways it marks the end of a long and tumultuous ride in our lives and certainly, in many other ways, it marks the beginning of a new chapter. Not only in our lives but in hers. Jacqueline has been a blessing for us as all SMS kids certainly are for their own families. While we may not always recognize this we should and we should be thankful for the many blessing that God gives us all!


-P

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Love Letters from Us.

I don't need to keep belly aching about what a huge achievement it is to still be sitting in that #2 spot on iTunes now that we are past the half way point of launch week, but it's really noteworthy and rad, and I hope it gives you as much pride as it gives me. What this indicates to me is that past our initial push and announcement of the album by all of you Rainmakers, new people have noticed Do Fun Stuff and have been inspired to post, or they have just simply bought and shared the album with friends because they LOVE IT. So this is great news. Again please be proud of this accomplishment. Take some time and brag about it to someone you know on the phone, or just a stranger on the sidewalk. Say, "we debuted at #1 on iTunes."

I have been trying to figure out how to do something nice for everyone that posted on the 30th and it is tough to figure something out that I can do for everyone so that nobody feels left out. If I could, I would drive around and offer to do some chores for you for a day, some dishes, some mopping, maybe some yard work, I would even fold all your laundry, just to say thank you, and give you a little break away from something you don't want to do. Cole decided nobody wants me folding their laundry to say thank you, she said, "That's creepy Ryan, no." So then I was like, what if I send everyone a little something in the mail to say thanks, like old school, a card or something-- and that seemed way more realistic. So this is what will happen. And I sincerely apologize. it is sort of a process. Two parts actually.

1. If you are interested in receiving a little thank you from Cole and I in the mail, go ahead and send me an email HERE with an address so that we can send you a little something. To keep things organized, so I can find your email easily, make the subject line: "I am a super awesome person that deserves nice things" I'm serious. It is true, and you are.

2. Please leave a comment in this post with a link to your blog post from the 30th. (and yes, if you were late and didn't post till later that is fine also.)

That is it. I am going to go ahead and say I am sorry in advance because I know someone a month from now is going to be all like "HEY jerk, I posted about Do Fun Stuff, and emailed you, and I didn't get anything, and so I think you SUCK!" and well that is to be expected.

Did everyone check out the two interviews that went up?

The first was with RickoLus who wrote "Adventure" and "Imagination" and Kate Inglis from Sweet Salty set aside some time from writing her second book to interview Rick, and they got all heavy and dreamy, and wonderful. Read the interview HERE

The second was with Steve Foxbury who wrote the song "Nothing" that was featured in LB's video, and Becky from Steam Me Up Kid put together a fall down laughing piece with Steve. Read the interview HERE

I put a lot of thought in who I would pair the artists up with, and so far the matches have been perfect. please take a look if you have some time, and there are more coming.

The response to the SMS stories have been so appreciated, and I encourage everyone to give them a look if you have not done so yet and let the authors know they were heard. Scroll down below and you will see them. Both posts have been superb in terms of perspective, and heart, and patience, and it really starts to paint a picture of Smith Magenis away from a long list of symptoms and characteristics. I think that thePRISMS site should consider dedicating a section to their site and find a home for these glimpses, for parents of the newly diagnosed to find. Don't you?

There are many exciting things still happening with the album, some heavy hitters are coming to bat for this little album in the coming days, and all of this has been ignited by you. It's exciting for sure. I still believe that the power of the blogger is stronger than the old record launch model. We shall see in the coming months. A friendly battle is waging for sure. How cool is it that Do Fun Stuff is on the heels of Yo Gabba Gabba?! You don't need to answer that, it's cool. Real cool.

I can't stress this enough. If you have not done so, PLEASE BUY THIS ALBUM, and when you do also take a minute to click on the stars to rate it, and leave a review behind.

All the Love in the Universe ~ Us

P.S. It is not too late to post about this album. The launch was on the 30th but this album will be around for a year until Vol.2 comes out. So... yes. Please by all means get moved and make some noise about it, the share widget tab is right there on the little green monster.

* I am sick of just referring to this thing as the "little green monster." So, anyone want to name this guy?! Tell you what, put some name suggestions in this comment section. If we pick your name. I will send you a poster when they come out from Rifle. That is a sweet ass trade :)

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SMS Stories: Another Birthday Arrives

I wanted to give you all the chance this week to hear from some voices within the SMS community. And so I will be posting stories from parents who chose to share a glimpse of their life with you all. Please embrace them and say hi. I'm serious. Just say hi and a little of your love to know that they are being heard.

This is from John Mayer, (I know I was thrown off by the name as well). John does not have a blog, but John was the first parent I had ever spoken to that had an SMS child. His son Charley, who was 25 at the time we first spoke. John is soft spoken and patient. Despite these two facts, our calls were always quick and purposeful, fitting in as much as possible before he would have to go, you could hear in his voice that he had a schedule and a routine to keep, and our new friendship and album project was a new addition in a well managed life. John was a huge help to me in bringing this album together with PRISMS, and he also raised our awareness level on what bringing up an SMS child can be like. I always enjoy talking with him, and hope our families can meet someday.

Please say hi to John and tell him thank you for helping with this album.

All the Love in the Universe ~ Me

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What I have to say – another birthday arrives

Charley is 26 years old today. He is still living at home with Debora and I. (We’re his parents.) Our house is in an old neighborhood not far from the center of our town. During the week he is out in the community as part of his day program – he calls these school days. During the evening and weekends, he enjoys his own time and is involved in things he likes – electronic games, watching tv, visiting neighbors and walking downtown to visit his friends and eat lunch, or several lunches.

Charley’s birthday party is on Sunday. 4:00 to 6:00 pm, Bowl-O-Rama – the same place it’s been for as long as we can remember. Invitations have been handed out -- some by us, some by Charley. We’re not sure who got them, and we’re not sure who will show up. We know grandma and grandpa will be there, some neighbors, a few people who support him, maybe some young people from the shops he visits downtown, and perhaps a mix of family friends.

It’s usually a good party. We celebrate another year. We are thankful for our circle of support. And we all enjoy this moment of fun. The lanes are open for bowling, there is pizza, music, and presents. Alan is making the cake – last year it was in the shape of a light bulb – this year it’s the shape of a key. Both these things are objects he is deeply obsessed with and give him comfort and joy. Thomas – an aide from high school who has kept up a friendship – is going to pick Charley up and bring him there. Things are as organized as they ever are.

Next week it will be back to the routine -- thankfully. This means different things to all of us, and needless to say, life is really complicated. Ozzie and Harriet where are you?

For Charley – it’s hard to tell where he is at. He can’t – or doesn’t know how to – share his hopes or his feelings. Behavior is communication. Routine is everything. Change creates anxieties. Anxieties fuel the behaviors.

I’ve been thinking more and more about how desperately he tries to shape his world – he doesn’t trust changes that might be happening – just more people making him do things he doesn’t want and doesn’t have a voice in. It’s all the more complicated because there isn’t a way to engage him cognitively in the planning.

The defensive behaviors are the same that we saw when he was at a school for autistic kids when he was four. His capacity for time-out was boundless – oppositional, defiant, sometimes aggressive. It was said – “god help you if you don’t have the same agenda as Charley.”

Building trust, getting him with the program (Exactly who’s program is it anyway…?), developing something he cares about, and building healthy routines are the goal and the challenge.

A couple weeks ago he hit Staci, his new teacher who had been working with us for the past two months. It was quick, it hurt, and came at a moment of high anxiety. They were off together by themselves for the first time and Charley was clearly not happy. It was kind of a slap – but shocking for her. They came back inside and we all talked about it. They went off for the program but the rest of that day was a stand off with Charley refusing to cooperate. They sat in her car for four hours. She quit her job the next day.

For me and Debora – it’s hard to know what to do. And it’s not like we don’t work at it and ask for guidance. But there isn’t anyone who is able to truly point us on a path forward. Stability and sustainability are goals – happiness would be a bonus. It seems like forever that we’ve been trying to find teachers to work with him – but except for Erin – we haven’t found one who has lasted more than a few months. And making all this even more complicated – Debora and I have been trying to “transition” Charley to a home of his own. So we’re also looking for room mates to share a house with Charley.

There are a lot of people who we’ve asked – the discussions, observations and evaluations that follow are all part of the routine and involve behaviorists, psychologists, case workers, and experienced “others.” What’s the right thing to do? What’s best for Charley? What’s best for us? The vision is always tempered with uncertainty.

For the moment, the birthday is the focus. Charley has been counting the days – “…two days before my party…” “ I can’t do this because I have to be ready for my party…” and on and on. He clearly is thinking about it and has hopes, expectations, and wishes. In the end, there is joy and there is disappointment – Thomas cancels at the last moment – but Molly and Kyle arrive and are a surprise. There are presents – a new gameboy, a package of batteries, singing, the cake.

Monday comes, and we’re back to the routine. Interviews are being scheduled, we’ve started to look at our program goals, and I’m hoping to squeeze in a moment of quiet for an afternoon nap.

-J

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Pushing Back For Our Spot on iTunes

#DOfunstuff

If I could have gathered all of you in one place on Monday night to throw a big nasty victory party, my hands would be red and raw from slapping high fives, my ribs sore from all the bear hugging, and my voice gone from saying thank you, and shotgunning beers with The Bloggess. I wanted to make sure that all of you realized how enormous it is that we made it into that #1 spot on the first day of the release. We get to say that we debuted at #1. Do you know how many albums are released every single week that will never ever even show up in the top 200? What I am saying is what we did here was totally badass and remarkable. Be proud of it. You were a part of a powerful display of what happens when people unite through social media.

You realize how exciting and gigantic this is for Smith Magenis Syndrome to be getting this kind of attention. Don't forget that important fact, this was all born to try and change the fact that nobody knows much about SMS, and think of how many people have at least heard about it now.

That is why watching the #1 spot slip away late in the morning yesterday was so tough for me. Not because I am a competitive baby, that just wants to be #1. Having that little green monster on the front page of the Children's music genre on iTunes is a huge win in terms of new people stumbling across the album and taking a look, and buying it. The Yo Gabba Gabba machine flipped its switch on Tuesday morning, and started working its new release. They bought a big bright flashy front page ad on iTunes, They were listed as New and Noteworthy in iTunes, Super famous bands on their album like Weezer and MGMT, they had commercials running, they have brand recognition working for them, email blasts, twitter blasts, TV appearances on Jimmy Fallon, celebrity endorsements on twitter. I watched their marketing machine push us down to #2. and I was like "HEY! WAIT A MINUTE, WE JUST GOT HERE" I immediately had that sour feeling I used to get as a kid when the rich kids would show up at the park with their brand new shiny everything, and all the kids would gather around to marvel at their new rad bikes, or Go-carts, and I was standing over on the other side still playing with the torn up football that everyone thought was awesome before they showed up.

When I worked for a record label there were many things that had to take place in order to create a successful release, and so going into this project I knew that I did not have any of those things to work with. The one exception being a great musical project, and as we have all seen in the past, if there is enough money behind a release, it doesn't even have to be a great musical project to be successful. The other giant hurdle is that people don't really buy records anymore. What I did know, was that I was part of a rowdy community, and if I could get everyone to be one big loud voice in unison, that there is nothing more powerful than that, and we did it. Think about how many people didn't do a thing to help out on the first day. Imagine what could happen if everyone, like really everyone would push together.

So this morning starts the push back. I think that we can beat all of that traditional marketing, and while they throw tons of cash money behind their product to get people to buy it, we will continue to throw tons of love and heart behind ours. In the end with the help of some heavy hitters of influence on the web, I think we can take that spot back. I really do. Do you believe that we can? Because it won't work if I am the only one that believes this.

HERE is the first step towards that push back. I was asked by Fast Company (as they are always interested in stories about innovation and influence through social media) to write up a piece about how Do Fun Stuff found its way to the #1 spot on iTunes in the Children's genre. So I did that. Today I am hoping that we get even more people that start reposting the widget or making their way to iTunes to buy this album.

Take a read HERE and really truly be proud of yourselves. Fast Company thought what went on here was badass enough to want to report on it. I think this is just the start. So yes. take some time today to read the Fast Company piece that I liked to call: "What I learned by activating my online influence (without the help of Ellen DeGeneres)."

I will leave you today with a quote from the film Rushmore, by the character Herman Blume, played by Bill Murray: "here's my advice to the rest of you: Take dead aim on the rich boys. Get them in the crosshairs and take them down. Just remember, they can buy anything, but they can't buy backbone. Don't let them forget it. Thank you."

All the Love in the Universe ~ Me

P.S. Please keep the reviews pouring in on iTunes. rate and review. rate and review. It makes such a big difference.

P.P.S. A bunch of you have asked about posters, HERE is what I know about that so far.

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