Monday, August 29, 2011

iRomy


Hope everybody had a good weekend. Although I know some of our East Coast neighbors had to dodge Mother Nature, hopefully everyone is safe and secure out there and not dealing with too many obstacles in their path.

Speaking of obstacles, I had my own to deal with last Friday morning, in the form of a Tonsillectomy, which is why you've seen a WEE bit of a lull in the 'iPosts', even though there are still a few pending to be written. Had a lot to do to get ready for it, and now there has been a lot in the way of recovery.

Wow...getting your tonsils removed hurts more than I thought. In fact, yesterday and today are probably the worst as far as pain and discomfort, and I expected that by today I would be skipping off to work merrily and without incident.


Such is NOT the case.

But you know what? It does tell me something. I find it very difficult to speak. The inside of my mouth is so swollen that I just don't talk, so I find communication difficult. But I know that, eventually, my communication will return. I also know that I can write if I want, I can gesture, I can draw a picture to get across what I want to communicate to someone. I can also type these kinds of posts for as long as I wish to remain at the computer, although I try not to do too much as I need to rest a lot.

Is there frustration? Absolutely. But at least I know there is a temporary nature to this condition. Our kids don't always know this or even understand what is happening to them.


These lessons that find their way to me are...uncanny in their timing. As if they are almost meant to. They teach me in ways I could never learn by simply going through the motions. They teach me with a profundity I could not achieve otherwise.

This pain really IS a gain. In many ways.

And so with that, let's 'talk' about Romy's iPad2, which was delivered last week, by listening to what her mom, Justine, had to say about the experience. 

'We received the iPad today! I let Romy open it because she loves to open gifts and I let her help me choose a few apps as well. Her face just lit up when I presented it to her! She even let out a few squeals of delight. In no time at all she was singing and dancing to music, playing instruments, and swiping through ebooks as well as repeating a lot of the words that she was hearing.




It is already holding her attention much longer than any other therapy tool we've tried. Simply put, she was happy! Very, very, very happy. Thank you guys so much for putting such a huge smile on her face.

I'm going to be downloading a few communication apps tonight and we can't wait to try them out first thing in the morning. I know for sure this will have a profound affect on her development. Thank you for gifting us with such an immeasurable gift! It is even more wonderful because it came from such an honest and loving place. It makes me very proud to be a small part of the special needs community.'

I love this community. I really do. What an amazing force.

Each person I encounter is more amazing than the next, and I consider myself a better human being because of this entire experience. And I don't mean just the experience of this iPad2 restoration project, though it is a very important thing, don't get me wrong.

I mean the entire experience of BEING a Special Needs Parent as a whole. I used to sit around wishing things were different, wishing that life hadn't been so cruel to me or my son. Now I reflect on how much I have grown as an individual and how many other uncanny people I have the honor of meeting because of the circumstances that have shaped my life.

OH! And this time...I did NOT forget the link to the video that Justine sent in along with her e-mail. So there won't be any need for a follow-up. Enjoy!




Is that not the cutest EVER!?!? (Although it is pretty easy to say that about every new movie that comes in, admittedly!)

Thanks for sharing the photos and the experience, and I'll get another of the posts up in the next couple of days, just as soon as I am able.

Many thanks also to Joyce, over at My Name is Sarah, for her funding drive over the weekend that resulted thus far in raising money for at least one more iPad2, covering enough for Kenyon's device, and we are inches away from enough for Super-T's!


Now THAT is an awesome way to promote some healing! Thanks Joyce!

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Wednesday, August 24, 2011

iSofia


Were you aware that we, as a species, were probably communicating with one another since, oh, maybe around 2.5 million years ago?

Of course, opinion on that varies wildly depending on what you actually believe as far as our Earthly origins, and I don't want to necessarily try to convince anyone what you should or should not believe, obviously, but just consider this, for a moment.

Some scientists believe that it is theoretically possible that Homo Habilis, and this would be the VERY first hint of the species of Man, and only if you are a person who believed in an Evolution of the Species, were communicating using primitive language-like systems (proto-language), that long ago. Wild, huh?


But let's say you don't want to take it to that extreme, and you want to go back to say...Homo Sapien, people that are just hairier versions of you and me. Well, maybe just me. That would place human communication at around 100,000 years.

That's still a long time.

And yet, did you know that a formal 'communication model' was never really laid out until around 1948? I didn't, not until all of this happened. Not until I started researching more about communication as a sort of 'hobby', you might say.

That's a lot of what these iPad2 Mission's help to fuel, on a personal level.

When these photos fill the Inbox, it makes me want to hit the Internet, they rev my engine to read more about speech and language, learn more about the difference between the two, study the models, order more books from Amazon and watch these children open doors that were once closed, even if it is only a little at a time or by leaps and bounds.

This past weekend, we got photos in from Sofia's family (as well as four others), along with some great messages. I, in turn, spent a lot of time enjoying photos, thinking about ways to possibly grow this project beyond Mission One, and burning a hole in Wikipedia.

From Megan, Sofia's Mom:


'The kids are at their grandparent's house this weekend while we are packing to move, but we promise to get lots of photo ops tomorrow when she opens her gift (and a more formal thank you for sure)! My hands are shaking as I type this and I'm crying. I guess good things DO come to those who wait!! Thank you from the bottom of our hearts!'

And then, from Dez, the Dad. (Note: I am using a deeper 'inner voice' as I type this. Hee hee.)

'As you can see, Sofia (and her older brother!) are already enjoying their new iPad2! Although we have been actively watching the previous blogs about the other very fortunate children who have received their iPad2 and cheering them on, it was incredibly surreal when the postman delivered Sofia's to us on Saturday. After waiting for so long, and being so disappointed, we couldn't believe that the day had actually come when we would see her open up her very own iPad! Sofia absolutely loves it. She is especially enjoying playing music and listening to animal sounds, so far, but we know that the possibilities will be endless and we cannot wait to see her thrive with this wonderful therapeutic tool!



When our son was born, we learned what it was like to love another human being with such ferocity that we would do anything for him, no matter what. Then Sofia came along. With all of her challenges and the difficulties that she faces, there is an urgency to that love that is hard to describe. Like so many other parents of special needs children, we feel that it is our responsibility to give her the best start that we can and there is nothing that we wouldn't do to provide her with every single possibility and advantage to help her thrive. This iPad2 is one of those advantages.

Thank you so much for taking a disheartening situation and turning it into a wonderful experience for our family, as well as the families of so many other special needs children. Words cannot tell you how grateful we are that this day has finally come!'


Great photos, and great to hear about such an awesome response to the iPad2 for Sophia!



I know that their family is in the process of moving, but hopefully once they get settled in they can get back in touch with some more pics and update us on any new applications they might have worked with.

Any of the other families as well...I would LOVE to post about any of your experiences with applications, breakthroughs, struggles and experiences you've been having with the technology since you have received the iPad2, since it will help to learn more about what might be applicable in some of our situations.

And in the meantime, since I can't build a Time Machine and go back to school and get a different degree, I spend some of my time trying to get as much education as I can on subjects about communication and language as I try to understand why my son has such a problem with his. Came across this today and thought I would share.


It's VERY basic, but I decided to take the advice of my good friend Mark, who suggested I approach my understanding of Bennett from a fresh perspective, and attack some of my questions from an angle of learning more about pure communication. Then see if some of the therapy questions I have fall into place later. I decided to take that approach for a while, but everyone's mileage may vary.

It is a fascinating little romp though...enjoy!

A Communication Tutorial

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Tuesday, August 23, 2011

iDummy


D'oh!

When I put up the iMarissa post on Sunday, I completely spaced out and forgot to link up to the video that Shannon sent me in her e-mail about the experience.

My total bad. I got so distracted by the blog post I stumbled on that Shannon wrote that I didn't go to her e-mail to pull 'parent quotes' like I usually do when I start writing the iPosts. So I was doing a little filing of the MiP Inbox I keep today, getting prepped to write another iPost this afternoon and I noticed her video link.

Well, I'm nothing if not willing to cop to a mistake! So here ya go!




Sorry Shannon! I would never intentionally dis-include movies!

PEACE.

-Ken
On behalf of:
Um...nope, this one is all on me.

 

Sunday, August 21, 2011

iMarissa



Sequence. Order. Format.

You'd be surprised to know that I'm actually extremely cool with complete deviation from those kinds of things. For example, you may notice that there is a check mark next to Becca's name on her button, but no blog about that iPad yet.

I noted the reasons regarding her private donation in the Recipients page, but that blog I will get to because there is a personal angle I want to talk about and it relates to my relationship with Becca's Mom, Kerri, from WAY back in the beginning of my son's experiences with Infantile Spasms.

Also, Jaxson has received his iPad, but there isn't a a blog because I have a few things I want to say about that iPad that go beyond just the device and the family and the photos. And as for Jake, I haven't received their photos yet, but I will, and I am not about applying the pressure on any of the parents...the photos come when they come. I want the parents and the families to have as much time to enjoy what they are experiencing, we'll get the 'iPosts' up when we get them up.

And I certainly LOVE it when parents are already Bloggers, because it means that they will have LOTS to say about the experience, making my job SO much easier by the parents writing so much material, especially if they beat me to the punch. And with what I have been experiencing lately, the less time I spend on the computer typing the better off my neck and arms are! :)

Shannon, who writes a blog called Chaotic & Comfortable, has a daughter named Marissa. To those of you perhaps visiting this space for the first time, this is not the Marissa who is mentioned in any of the blogs about the original iPad 2 contest, that is a different person.

Her family received the iPad2 this weekend, and she posted about it over there. I'm just going to reprint that post here because I love being able to share the words of the parents directly. They are much more profound than mine.



'All of us are born for a reason, but all of us don't discover why. Success in life has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others.'
~Danny Thomas

Many months back, I made an announcement here that Marissa was named as one of 40 recipients of an iPad through a 'contest' hosted by another blog. Without drudging up all of the ugliness that has ensued over the past several months surrounding this 'contest', I'll just say that the promised iPad was never received. I have no idea the real circumstances and although I have my own personal feelings and suspicions on the subject, I'll keep them to myself because I am no more qualified to act as judge and jury than anyone else.

Anyway, back to the purpose of this post. Some other contest 'winners' decided to take it upon themselves to right some wrongs and single-handedly restore the faith of the special needs community as a whole and created Mission iPossible. This group of folks is truly amazing and took on this task with nothing to gain for themselves. They had no idea how they were going to do it or how long it would take, but decided that their mission was to get an iPad into the hands of every kid who was promised one and whose family still wanted to proceed. Selfless - yes! Compassionate - yes! Crazy - totally! Ken, Heather, Maureen and Darcy have given birth to something big and I don't see it ending with these 20 iPads. Recently, they have also partnered with The Gwendolyn Strong Foundation, another incredible organization dedicated to improving the lives of others.

Honestly, I didn't expect to receive an iPad for Marissa, at least not for a very long time. Not because I didn't trust Ken and crew. I just couldn't imagine four people getting together on a whim and making this happen. Heck, I know how hard it is to raise money. I know how hard it is to try and convince people that what you're doing is worthwhile and important. It's nearly impossible. Truthfully, being a small part of this mission (as a recipient), watching iPads land in the hands of deserving children has meant so much more than getting something. It has given me a renewed faith in humanity. It has reminded me that goodness still exists in the world. TRUE goodness - you know, people who not only talk the talk, but actually walk the walk! Those people are hard to find nowadays. I have 'met' some truly amazing new friends through this experience.


Well, this week, it was Marissa's turn! I've pretty much been speechless since I got the email from Ken that funds were secured and Marissa's iPad was due to be purchased. We all know speechless is something that I'm usually not. It's "just" a computer, right? To us, it's a door opened for ALL of our kids. When I think of what this piece of technology might be able to provide for Marissa, Esen, Kamila, B & H with all of their unique needs; it brings tears to my eyes. This is not something we would ever have been able to justify spending money on so it is truly an incredible gift! I will admit, I'm a wee bit frightened of it - after all, we still live in the land of the free flip phones and yes, there is still a walkman hanging around our house. No, we don't have an iPod, MP3, XBox, or any other type of gadget; heck we just finally bought a laptop less than a year ago! But, we're eager learners and I'm pumped to find an 'app' that might just do the laundry for me!

So, on to the million dollar question - how do you properly thank someone who has changed the lives of your children for the better? I don't have the answer yet, but knowing the Mission iPossible team, I think, for now anyway, this will suffice just fine:


Sure does! What a bright, shiny smile she has. It is so infectious, I showed the photos to Bennett, who always reacts to photos of other children very well, and who giggled and smiled while looking at the pictures. He loved them.

For me, during this weekend where he has just not been his usual jovial self and almost more than I could handle, making me have that much more fear than I would like over what could be happening inside his head that could be causing this level of behavioral shift, it was an incredible lift, almost a divine gift, not just from you but from all the parents who have sent photos. They are nourishing to my soul like you would not believe, and I thank you very much for them, very much indeed.

They are like treasure. Treasure whose value is unable to be measured.

Keep 'em coming.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Wednesday, August 17, 2011

iLevi


One of the most difficult things in writing these 'iPosts' is not what you might think.

Most people think I find it difficult to think of things to write about, or have trouble coming up with an 'angle', a way of approaching each separate 'iPost' uniquely and differently, in order to make each one of them special. Frankly, that part is easy.

Each CHILD is special. Each CHILD is unique. I don't have to try in the least bit to figure out anything when it comes to making an attempt at presenting them. They present themselves just fine, thank you very much. They are so beautiful, so perfect, in every way.


No, what is difficult for me is that I wish I could be there for these presentations. More than you can ever really know. And it is purely selfish of me, I realize that, but there is such a power in seeing these images when they arrive, it is SO real and SO tangible, that to actually be fortunate enough to be there and watch these children as they learn and explore new and exciting worlds would really be something.

Of course, the WAY we present the iPad2 devices would have to change. It never occurred to me, until it was recently brought up by one of the families about some applications, not in a snarky way but just as a matter of fact, that these arrive to the family all wrapped up. But does that really make a lot of sense, when you think about it?


If it is wrapped, and you hand it to the child, it is a box that has an iPad2 in it, but NOTHING ELSE!

OOPS!

Hadn't really thought about that before! It has to be configured, with applications installed, and all that junk. So wrapping it might not be such a nifty idea after all!


BUT...since we started out by wrapping on this Mission One, I think we should continue to the end by doing it, for consistency. When we start Mission Two, we will probably change this approach. But more on that in a bit. First let's hear from Angie, Levi's Mom...

'THANK YOU!!! I have watched in utter amazement as you all have taken what was once a disheartening situation and turned it into a opportunity to bless a group of children who often get overlooked in the world. My sweet Levi was DELIGHTED when he opened his gift! He loves playing on my iPhone, so the bigger screen is perfect for his fat little piggies!

He also was so enthralled with the App (Build a Train) that he actually sat still and FOCUSED for quite a long time!

This will not just be entertainment for Levi. The possibilities of what he can learn are endless and that not only benefits him, but our entire family! Just the thought of him being able to communicate his wants and needs fills me with excitement!!


We just brought home Levi's sister from Russia. She and Levi are both 4 (11 days apart) and both have Down Syndrome. She is also non-verbal. I am thrilled that she too will benefit from this give-away!!'

That is awesome, two for one! And clearly, Angie re-wrapped the iPad2 after opening and installing the Apps, which is cool, and I wanted to let any of the Parents know...please, do NOT worry about it! If you do, great. If not, don't sweat it. We aren't!

The kids are getting their iPad2s! Consider the wrapped item as our gift to YOUR family, and you don't need to take any photos of your child unwrapping a present or anything, this is not what matters to any of us, seriously.


What we care about are lots of shots of your child playing with and learning with the new device. THOSE shots we do love to see, and lots of them, so keep them coming! And remember, you don't have to stop with the first round of photos. We have a Facebook page, and in it there is a Photo Album that is dedicated to your child...and it is HUNGRY for photographs!

As are we all. :)

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group

Monday, August 15, 2011

iElizabeth


I was wondering if this particular iPad2 was EVER going to get into Elizabeth's hands! :)

But the good news is, she has terrific grandparents, and she was staying out there for a couple of weeks, and it was just a matter of timing that kept this particular mission from reaching its final stage of conclusion.

But when it did...according to Cyndy, Elizabeth's Mom, and her Aunt Kathleen, who has also been majorly involved in a lot of the behind the scenes communications, there has just been an enormous amount of WOW. And that is exactly the kind of word that I most often hear from the loved ones of any of the kids that pick up one of these machines and start using them.

WOW.



That video was sent to me by her Mom, and I asked her if I was allowed to post it. Earlier she had sent me some shots she had to take with her phone, that you will see below, in low light that I went back into and sort of painted on with some filters and brushes and asked how she felt about them.

She was cool with the changes I made since it enhanced the imagery, and when she sent along this video and the OK on the photos, she said this about the video, and I agree...'I think that it provides a genuine impression of just how MUCH Elizabeth LOVES her iPad'.



Kathleen also sent me a couple of photos as well, and some notes, the photos she took are at the top and bottom of this post. I was very taken with what she said about what she observed in the opening weekend with Lizzy and her iPad.

'Her favorite game so far is Word Bingo and she is counting and writing letters and spelling words! My sister spent half the afternoon with her mouth hanging open in awe...Once she learns to read (which I hope is soon with the iPad), the sky will be the limit.

BTW, she has perfect pitch (we already knew that) and she memorized the ABC song this afternoon using the ABC Song App after just 2 listens all the way through.'




To me? That is astounding. Simply astounding.

But I think the best of the notes that I got from either of the sisters was the first, the one right after they let me know that Elizabeth got the iPad, the one that first captured the essence of the moment.


This is the one that I'll always go back to whenever I think about this particular iPad and this particular kiddo.

'Elizabeth came home from her grandparents tonight, by the time I had helped her out of the van, and brought in a load of groceries, she had found the re-gift wrapped iPad, unwrapped it and was sitting on the couch playing with it. :-) So much for the photo op of unwrapping. :-)

She is navigating through the apps, viewing pictures, building a snowman (cause it's 80 degrees here and she wanted build a snowman for her big sister).


I'm amazed... for a child who cannot read from a book, due to visual impairment, she can search and locate apps without any difficulty. And, although her fine motor issues make it difficult for her to write she is easily drawing letters and spelling small words with the iWrite words app.

Thank you for this, our lives are forever changed, words cannot express our gratitude.'



I think words expressed it just fine.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group



Thursday, August 11, 2011

How to Read the New Graphics


Just so you know...those three boxes up there? Yeah those...they went out yesterday. To Levi, Jake and Jaxson. Pretty cool huh?

So while we wait for Elizabeth to get hers, and those to get to their destinations, and for some funds to move around, I thought I would post some info I have been meaning to about the little buttons that you saw pop up over the weekend on the right hand side of the page.

In the Blogoverse we call that a Sidebar, your honor. Here's what the images mean. I'll use the name Bennett for this illustration, just because it was the first name I thought of.


Donate
This shows a photo of the iPad2 and a DONATE icon, with the name of the child who will be receiving the iPad 2, and if you click the button you'll be taken to the GSF Donation page to hopefully keep the process of fund-raising moving right along. And since there hasn't been any in a day or so, I know we have some work to do ahead of us...


Funds Acquired
This shows a photo of a Victory newspaper headline and a DOLLAR SIGN icon, indicating that the funds needed for the iPad2 have successfully been acquired through donation. This does not necessarily mean the iPad2 is ready to ship. We still need to gather the funds from whatever sources we might need to grab them from. The Thermometer widget on the site shows overall progress of Donations received, not funds in our actual pocket. But the good news is that when this icon changes to this level it means that the goal of raising the money for this particular Recipient's iPad2 has been achieved!


Verified/Notified
This shows a photo of some college kids looking through microscopes and a VERIFIED icon, indicating that the funds have successfully been positioned, Parents have been notified and all their paperwork is in order, and the purchase of the iPad2 for this Recipient is now in motion. It is simply a matter of scheduling it, making the purchase and getting it ready for shipment.


Shipment
This shows a photo of a vintage Federal Express plane and pilot and a PLANE icon, indicating that the iPad2 has been shipped and the Parents have been notified of the particulars concerning its arrival. A Delivery Confirmation number has been sent to the Parents so that they can plan ahead, because these deliveries always require a signature and also so that they can check the progress of the package on the USPS.com website. Why use USPS instead of FedEx? I'll cover that in the FAQ, and that's coming very shortly.


Received
This shows a photo of a child opening up a mailbox and a RECEIVED icon, indicating that the Parent has notified us, or we have noted by checking the USPS website, that the iPad2 has arrived and been signed for. At this time we usually are waiting for the Parents to have some fun time with their kids and family, become familiar with the device and enjoy the moment. There is no rush. It takes some time to actually learn your way around one of these things!


Mission Accomplished!
This shows a photo of the Recipient with the iPad2 and a CHECK MARK icon, indicating that the iPad2 has been received and the Mission has been accomplished! The photo will be pulled from the set of photos provided by the Parent. If no photography is provided by the family in the interests of privacy, some substitute photograph will be created for the button.

And there you have it.

As you can see, most of the buttons have had the names changed to actual first names, with one exception. I've discussed it with the Parent and in the interest of privacy we've agreed on keeping the child's name as it is. It's a good call and I totally support the Parent's reasons, as I would anyone. The whole reason for Codenames in the beginning was because we wanted to offer some trust and security since we were fairly unknown quantities and the climate was very different, even a month ago.

Times have changed a lot, and we've proven a lot, and so that need is not as dire. BUT...that doesn't change an individual's rights, which we do respect, and that's that. :)

Hope that helps you all understand the graphics a little better, and here's to hoping some iPads arrive today or tomorrow!

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group



Tuesday, August 9, 2011

Half-Full


There was a time when I would very easily and very quickly categorize myself as a 'Glass Half-Empty'-Type Personality.

I don't believe that to be true anymore. In fact, I'm not even sure it is even possible these days to feel negatively about anything regarding this mission. It just feels too darn good.

Don't get me wrong, I still get bummed out about stuff. I worry about my son. Though I am less AFRAID than I used to be (more on that another time). But I get bummed. My wife was watching some old video tonight, and it stung to see Bennett saying 'Hi Dadda.' as clear as a bell at 17 months or so, just as happy as a clam, and he still can't say the two together in a sentence now.

He turns four in November.

Brain tumors? They kinda suck. And Infantile Spasms suck even more.

And that bums me out...so never fret, I didn't suddenly grow 17 additional inches in height, sprout a fantastically huge set of teeth and an enormous and manly yet subtly sexy chin, begin writing several self-help books and start planning a motivational speaking tour in a city near you.

Though I wish I did.


Cause isn't he just dreamy?

But you can't look at the fact that here, today, it is August 9th, we are 3 days away from what will be the One Month Anniversary of the official 'start date' of this website, and we weren't even accepting DONATIONS at that time, and because of the staggering generosity of so many people, we have gone over the top of the mountain as of this morning.

That's right. We are now over 50% of the way towards the completion of our Mission One goal.


That's right. Cat's know everything. Including how to celebrate.

We have four kids who have received iPads...Christopher, Luke, Sam and Elizabeth. There will be a bit of a delay in the Elizabeth post, because she still is not back from her grandparents, but her Mom has confirmed that the iPad2 has landed, is loaded, and is ready for launch into her daughter's hands this coming Friday.


Three more iPads have been purchased, and those three families have all been kept in the loop on the progress of their fund acquisition and purchasing.

Those three iPads were wrapped up today and are going out tomorrow to Levi, Jake and Jaxson. They actually WOULD have shipped today, but you can blame me for that. Carter, that is my older son, was inexplicably doubled over in pain all day. So it was a bit dicey all day long.


But they will go out tomorrow, but that isn't the end of the good news, because if you look at the Donation Total, and at the new graphic buttons, an iPad was given to Becca a week or so ago via private donation.

We also have the funds raised for ANOTHER two iPads, those for Sofia and Marissa, and we are inches away from enough for Addison's, and as soon as we get there we'll pick up those three.

It just floors me...how far this whole thing has come, in so short a time. And I believe our best efforts as a community are still yet to come. I'm so excited, this makes me want to pop open an ice cold Dos Equis and have a drink with The Most Interesting Man in the World.


And I don't even DRINK.

Stay thirsty my friends!

Oh and...PEACE!

Yeah...PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group


PS...A Special HAPPY BIRTHDAY Shout-Out to Sarah, at My Name is Sarah, who turns 22 today. Happy Birthday, young lady!


Monday, August 8, 2011

iSam


If you've ever had to live with a degenerative disc issue, or other kinds of chronic back pain, you know how much of a problem this can be.

It strikes without warning, like the Ninja, and never when you expect it. People always say to you 'Hey don't lift that, you'll hurt your back!' But you chuckle and know that you never hurt your back when you lift stuff, because you are READY for it. You get into the proper posture, you prepare yourself, you align our legs.

Back? Secure.

No, instead you throw out your discs when when you sneeze, or when you casually go to pick up a bar of soap in the shower, or when you round the corner of the downstairs hallway in JUST the wrong way.

Then ZING...that oh-too-familiar pain starts sizzling up your spinal column and into your arms and legs, and you know that you and it are going to need to make nice because the two of you will be playing cards, sipping drinks and doing all sort of intimate things together for at least a week. Maybe more.


So my pain had me up late last night, and I was still stressing very much over the iPad2 that we had sent out of the country, the one to cerealgirl007-Cereal World, the one that, according to FedEx, had not landed yet. We had sent two out, and one was accounted for, but this one? What was holding it up?

I went to my computer to check the FedEx tracking number again after midnight, but I checked my e-mail first. And when these photos started downloading, the pain melted away, as it always does during these...these amazing and wonderful moments. These moments that, every single time, make my eyes fill with tears of joy.

They are PRECIOUS, which is the exact word I used when I wrote to Sam's Mom to tell her I got the photos and how relieved I was that Sam's iPad2 had been received. I had earlier asked about using his first name, a request I have sent to all of the parents though not all have yet responded and one has (for personal and perfectly legitimate reasons) said no, and she said it was OK to change the Codename from cerealgirl007 - Cereal World to iSam.

She also had this to say about Sam and his first experiences with the iPad2, which had arrived already, even though FedEx had NOT updated their online number.

'He spent most of the day talking to Tom the cat, printing and drawing (Yay!) and making stories. I am absolutely astounded at how much effort he's put in to expressing himself - it seems to be just the tool we've needed..,. and I've only installed a few apps so far! Seeing how he's so much more attentive to his fine motor skills already, and is starting to take care to speak more clearly (yes, in just a few hours) I can't wait to see the changes that come as we start to use it more over time.'


Obviously the the artist side of me is thrilled to know about the drawing part, but what jumps out at me about what she wrote are two things...'in a matter of hours' and 'just the tool we've needed'. Both of these phrases I have heard, in some way or another, not just from the three parents who have written in, but from OTHER parents I have spoken to about their children using an iPad2 for communication and learning.

It's important to keep both of those things in mind as we move forward in this, because we'll be coming back to that again and again and again.

She thanked us obviously, and a lot, but I don't want to dwell on that by re-printing that, because I have to be honest with you, it is really not necessary. I'm not blowing smoke when I tell you that the expressions of gratitude are wonderful, and they are appreciated certainly, but those photos are like a glass of water to a person who has just stepped off the surface of the sun.

PRECIOUS. PERFECT. WONDERFUL.

Keep them coming. Even after this first experience, keep them coming. Check in. Be grateful by remembering that we are a community, after all, and this relationship does not have to end with this post. All of your experiences with applications you have tried and bought can be shared here, to the benefit of other parents who will follow in your footsteps, and as you well know, opening any Apple device isn't necessarily the easiest task in the world...especially since they don't include any instructions with it!


And remember...we do have a Facebook page that holds the photos of this event, and I would love to add photos of Sam, Luke, Christopher and all the other iKids to it. New photos, as they grow, as they learn, and any thoughts you want to share as well.

These pictures, these moments, these experiences...are nourishment for the soul.

We should all dine together often!

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group



Friday, August 5, 2011

Updates


Didn't mean to leave you hanging.

When we shipped out the iPads to the Recipients who are going by the Codenames of 'Scooby Snack' and 'Cereal World', we failed to factor in two very important things...a vacation with the grandparents for 'Scooby Snack', and the perils of Customs for the international shipment to 'Cereal World'.

The 'Scooby Snack' iPad was delivered a couple of days ago to the Mom, who downloaded some apps and re-wrapped it in anticipation for the arrival of her little one, but the International iPad of Mystery (Yeah, Baby!) is still in transit according to the FedEx tracking system, so we're all keeping our collective eyes on that and hoping it shows up very soon.

When it absolutely, positively my...AHEM...


So each day I've been looking at the blog going...OK, I know I gotta put SOMETHING up here, I mean, the week is almost over, but I really don't want to lose that awesome image of Luke at center stage, but it's gonna be the weekend soon and I can't NOT say something, but if I go on and say it I'm going to lose that awesome picture...

But, you gotta do what you gotta do, and besides, we should be celebrating The Awesomenessness That is Where We Are.

We've sent two iPads that have been received, and two iPads that are soon to be classified as such. Two iPads are going to be purchased imminently and the parents have been told about this. We've raised funds for around 2 more and will keep pushing to get that to just over the 2 mark and then put those in motion. (We like to do them in groups of 2 or 3...just easier to manage that way, don'tcha know.)


Considering we've been 'officially' active since July 12?

That's astounding.

As a community, those of you who are affected by Special Needs or those of you that love someone who is, you should all be blowing out your elbows and shoulders patting yourselves on the back.

This could NOT be happening without all of your support. For real.

Have a fantastic weekend.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group



Monday, August 1, 2011

iLuke


'The first step towards getting somewhere is to decide that you are not going to stay where you are.'
-John Pierpont Morgan


As the saying goes, the first step is always the hardest.

I've never agreed with that completely.

I think the first step can be difficult, but the second is usually harder. The first step can, most of the time, be achieved in many circumstances through emotion, through adrenaline, or through sheer force of will and determination. Sometimes even by luck or circumstance.


As it pertains to the facilitation of the giving of an iPad2 for Christopher, that was achieved in one fell swoop by a single donor, and the entire process was well underway by the time that this site was even in its infancy. Even the next two? Mostly covered by the generosity of a single donation.

But I'm not talking about actual donations-to-iPads specifically, more about the actual Mission itself, and the setting of all of its wheels into motion. Its been a daunting, exhausting, stressful task and sometimes a little overwhelming. Taking that first step to make the decision to do this was easy, but all the steps afterward have each had their own unique challenges.


But when you see pictures of children like Luke Lundgren getting his iPad2, all you feel is joy. All you feel is relief and hope.

You smile and recognize that, in the end, any challenges that you have faced are so very minor in the face of the challenges that these children are confronted with every day, every moment, and those that they have yet to face...for the rest of their lives.

It is remarkably humbling, that much I can promise you. And even moreso to hear the sheer exuberance in the tone of Luke's mother, Kristi, when she e-mailed us mere HOURS after getting the iPad delivered:


'Luke is loving his iPad! With his cortical visual impairment, the interactive (lighted) screen has been wonderful. The bright colors and enlarged print allow him the best visual interaction possible. He adores the Touch and Say app. (highly recommend it!) He's been repeating the sounds he hears and singing along with parts of songs. It's a fun app! The other thing we're encouraged about are his fine motor skills. Before we got the iPad, Luke was just starting to figure out the use of his pointer finger. The iPad is really reinforcing this skill and teaching him better fine motor control. It's such a great device for a kid like Luke!'

I read that, and then started opening these photos that came into the Inbox.

I was speechless.

The irony of that statement, or even this Mission sometimes, is not lost on me.


Here, regarding communication-related disabilities, and an original contest for communication-based technology, specifically the Apple iPad2, where a lack of communication resulted in mistrust, doubt and ultimately action.

A community rattled by accusations, suppositions and secretive communication. And a person who struggles at times to manage his own communication effectively, representing a group who has made it their Mission to do what they can to fulfill promises broken, while sometimes struggling to communicate as effectively as they would like to with each other.


But then you see the wonder and the power and the potential in the eyes of a boy like Luke, and it is like a magical elixir, a healing agent, and when you drink from that cup it is like you have been filled by something so much more powerful and so much more significant than anything you have ever known and will ever know again and you are significantly and forever changed because of it.

And nothing else matters. Period.

But the greatest thing to take from the experience is the knowledge that these photos, even though they symbolize the completion of a 'Mission', an accomplishment of a goal, is to know that this is not an ending at all.


It is a beginning...a beginning for Luke, and for the Lundgrens, as they enter a whole new world of communicating with each other.

Together.

PEACE.

-Ken
On behalf of:
The Mission: iPossible! Group