Friday, October 14, 2011

iLuke S.


One of the things that has reached out and grabbed me the most about the nature of this entire experience is that even though all the kids share the common characteristic of communication-related obstacles to overcome, it amazes me how unique each child's circumstances can be. How special each family really is.

What drives that home, with indescribable force, is reading the documentation of someone else's child.

If you have a child who is disabled, you know the type of stuff I am referring to. Those dreaded IEP's, or Individualized Education Plans. Or whatever variation they may be called in your neck of the woods. These are the written components of the reviews and meetings that we have with our children's Therapists and Teachers that document the 'progress' of the one we love.


And I put quotes on the word 'progress' for a reason, because as a good friend of mine, Sinead, once called them, they are not always Milestones for our kids like they are for the Typical Kids. They are often Inchstones.

I know Bennett has a QUARTERLY review. So every three months, I go to the school and I get to see, on paper, just how poorly he is doing. There are small nuggets of progress. And I need to learn, AND I WILL LEARN, how to turn those nuggets into a kingly feast, because they used to hardly nourish me at all. But that can change.

It was not until THIS experience, THIS Mission, that I was ever exposed to the same documents, but of kids other than my own.

And what a moving, precious, life-altering experience it has been. What an appreciation it has afforded me for all of the things that we ALL go through. Not just kids with Epilepsy, or Autism, or Brain Tumors. But kids with Down Syndrome, SMA, Miller Deiker Syndrome, Fragile-X Syndrome, Mitochondrial Disease, Cerebral Palsy and so many, many more.

Our kids may have different things that ail them, but we as Mothers and Fathers share one common characteristic...we are separated, you and I, as parents, from being able to relate to our kids in ways we NEED to. We can't communicate with our kids, sometimes on the most basic of levels. We can't express our feelings to our kids and even more painful to us? Our kids can't express THEIR feelings to us, or sometimes their most basic wants and needs so that we can take care of those things.


It's all we want. It's all we ever really need. At the core.

Obviously that does not apply to EVERY disability. If there is anything this journey has taught me it is exactly what I said when I started writing this: how unique each child's circumstances can be. There are some kids whose needs go WAY beyond mere communication, and I will not forget to mention them here. I think it important to always maintain perspective.

But these IEP's, and other reports, challenge us in many ways when it comes to trying to maintain a healthy overall attitude, something I have been working extra hard at trying to focus my energy on. And they can often attack some of the positive strides we make. At least, I have found this to be true with me and many of the blogger's out there who speak honestly about their experiences.


But I never realized or had an idea of how much reading these reports of OTHER children would effect me. And they do. Very much.

I should point out that I did not receive that many full-blown IEP's, which was fine. It was not an absolute requirement in this first Mission. Some chose to send one. Others did not. Totally groovy. And I tended to receive the ones sent in later as the main address was shifted from California to Ohio.

But that's technical.

When I opened up the folder that was sent in by Luke's Mom, I was struck by two things. First, by the sheer volume of stuff. Kelly sent in, bar none, the single thickest packet of all the parents. Second, the detail of all of the information. It was all very in-depth.

And as a matter of pure luck and timing, the packet happened to arrive when I was on my way to go to something where I knew I would have lots of time to sit and wait, and I took the packet with me to go over. I ended up reading the entire thing, front to back.

It was a profound experience, and I shared that with Kelly. By the end, I had tears streaming down my face. Her son had been through SO much, and it got to me. Their story got to me. And it was cumulative. I realized that EVERY kids story had gotten to me. I was more attached to this Mission than even I had understood. It has a...power.


But after I got myself together I also realized something...wonderful. Every story had also inspired me. Every story has lifted me up. Every story has made me happier, too...seeing the kids get something out of the experience, even if it the smallest of connections between parent and child.

I could not WAIT to get the iPad shipped and into their hands. And of course, in one of the kindest gestures imaginable, she shifted her position on 'The List' and moved Liam to her spot, all because of what the Olson's had been going through over the past few weeks.

A remarkable family. With a remarkable boy.

According to Kelly:

'I have to say that when your package arrived, I thought, Hmmm, I wonder what that is — completely forgetting the iPad was on its way. After having thought about this how device could benefit Luke for over a year now, it was actually surreal when it crossed our threshold.'

'For some reason, Luke thought the box itself was just the best thing ever. He got into one of his giggle fits (not so frequent, but much treasured in these parts) and just fell apart with laughter—and that was before we even switched it on. Of course, poor Luke's ancient mother and father stood around and eyed it nervously for a time, wondering what technological genius we required (and definitely lacked) in order to make it work. Honestly, I have no idea how it happened, but suddenly it was on, and I found myself searching for apps I'd researched months ago. WHAT FUN!!'


'Luke is seriously fascinated by the thing. He's not quite sure what to make of Doodle Buddy, but he seems to love how colors magically follow his fingertips when he touches the screen. Magic Piano is definitely his favorite (and great at getting him to use his right hand). He's also interested in the Tap to Talk app, and likes hearing a voice when he taps on the icons, and he really likes Elmo's ABCs. And he loves when his big brother is playing World of Goo or Bubblewrap!! We've only scratched the surface, but what a great start!'

'We have been on a long road since Luke's birth, and while there have been a number of detours that I would not wish to take again, there have also been moments of great joy and expressions of such kindness and generosity by people we have met along the way - this is definitely one of those "joy, kindness and generosity" experiences. I know you've said that you and Heather and your original cohorts don't require any thanks, but there's no way to have been on the receiving end of the Mission iPossible enterprise and not be filled with gratitude. It's about far more than a cool device; it's about my family's deep appreciation that you felt moved to take something that was negative and filled with suspicion and transformed it into something about community and hope. So... THANK YOU!!'


There is almost a...reluctance in me to end this post. Part of me does not want to, because it is the last 'iPost' of this first Mission. It's not the end of this entire endeavor, not by a long shot, just the end of one small part of it.
Still, feels...strange.

But I'm not going to dwell on the sadness of it, rather celebrate the fact that we met our goals and set out what we hoped to do, despite a lot of unexpected obstacles and with limited resources. This community is special. Very very special, indeed.

You done good, people!

PEACE.

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

Wednesday, October 12, 2011

iErin


EIGHT.

Can you imagine? Eight kids.

Now, I find myself whining about the trials and tribulations about raising ONE Special Needs child and ONE Typical Child all the time, but EIGHT CHILDREN?

Unreal. But that is exactly what Kris, mother to Erin, and author of the blog Party of Ten handles, seemingly effortlessly, on a daily basis.

You might find that I am writing this a little less formally than you are used to seeing. Well, I have actually had the good fortune of getting to know a few people from The Twenty over the course of this journey, as I have mentioned before. Not sure of the reasons. Some people I guess just have responded to the fact that I am a strange melon.

Kris and I share a few common interests, one of which came to my attention when I saw her address. She lives in the Holy Land.


That's right. Green Bay, Wisconsin. Now...as cool as it is that Eric Olson got to go to Fenway Park with Liam, it is equally as amazing to me that Kris and family are Cheeseheads.

Because although if the Baltimore Ravens were to face the Packers in the Super Bowl, which I really thought they WOULD last year, I would have to root against them, I have to tell you...ANY team that beats the Steelers is A-OK by me. And besides, I have always liked the Packers, mainly because of Favre.


I've also had the pleasure of speaking with Kris on several occasions by phone, which I always enjoy. I don't get out of the house much, so phone calls are ALWAYS a welcome opportunity to blab away about all kinds of things. In the beginning, it was about all kinds of crazy paranoid stuff going on, but later on there was a...special subject of interest, but I'm not ready to talk about that just yet.

So...without further...what's the word...adieu? Here's Kris's post about the arrival of Erin's iPad.

'Months ago, at the suggestion of a friend, we entered Erin in a special needs iPad giveaway, hosted by a popular blog. To our surprise, she was chosen as one of the "winners". To make a long story short, none of the chosen winners received iPads. The blog host, a special needs parent himself, was, monetarily speaking, the only "winner".' 


'Many in the special needs blogger community were left feeling disheartened by the whole experience. Now, on the one hand, it was just a promised iPad that was lost; we get over that quickly enough and move on. On the other hand, special needs families often feel a connection to one another because of the extra challenges and blessings that come with our extra-ordinary kids. We share that bond. When this whole ordeal happened, we felt we had lost trust in one of our own - someone from within the special needs community whom we had grown to trust. That had a longer lasting impact, and frankly, felt like a betrayal.'

'Enter Mission iPossible! Some lovely folks (whom I have now gotten to know in blogland) decided to do something positive in response to the original iPad-giveaway debacle. They put their heads and hearts together and began a mission to restore these iPads to the original winners, all kids with special needs who would greatly benefit from the amazing iPad. They have now completed their mission, in only a few short months!'


'Last week Erin received her iPad. And it is amazing. Honestly, it is hard to over-estimate the impact this will have on Erin's learning. The visuals, sounds and touch of the iPad, not to mention the many apps developed just for kids who learn differently, or who have extra challenges, are a huge, huge benefit for Erin.'

'After only one week, I can already see the difference in her attention span, fine motor control and development. Her motivation for speech (which has never been lacking) has also improved. I think articulation of speech will follow in the months to come. She becomes engaged and challenged by the "lessons" of the many apps, which to her are games that make her giggle.'


'Thank you, thank you, thank you! What more can we say. The Mission iPossible team, and of course the generous donors who made it possible, have restored not only iPads, but also the dignity that was lost in our community.'

You can head directly to Kris's website to see a pretty nifty video of Erin, and more photos, though I will load all the photos I pulled off her blog into the Facebook folder when I update over there. I can't figure out how to transfer the video here though. And why not contact her and ask? BECAUSE. You ought to be going over there and checking it out. Important to spread the web of community, especially now as we wrap up the final stages of Mission One.

Because when we start to lay some of the bricks into the foundation of Mission Two, and what will become something that for the time being let's just call 'Side-Missions', my hope is that Community plays an even larger, more expansive role in all of this. ;)

PEACE.

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

Tuesday, October 11, 2011

iSam N.


Ah...how I often change things up. I'm the Tim Lincecum of blogging.

I'll pause while you Google that.

You back?

OK.

I started off today with Luke S.'s iPost. But since Kelly, Luke's Mom, does not blog, I began to write. I must be in a writing mood, cause the thing became a volume, and started become something of a 'conclusion'.

Can't have that.

SO...I figured I would hold off, since I had so much to say in it, and go with the other two iPosts first, since both parents are are already bloggers themselves, and they said it all already!

Let's first go with Emma, who writes Living on the Spectrum about her son, Sam.

I started this post at 4 this morning after yet another sleepless night. For some reason, the magic cocktail that had Sam sleeping for the majority of the night stopped working a couple of days ago. But that is the subject of another post.

When I saw that Sam was number 19 on a list of 20 at the Mission: iPossible site, I really thought it would be a year or more before enough funds were raised to purchase his ipad. What has happened over the past few months has been amazing to watch.

I got an email from Ken, one of the people in charge of Mission: iPossible, earlier in the week letting me know that Sam's iPad was on the way. Since I am a teacher, I was home for the Jewish New Year and I was able to watch for the mail. Friday at 11, this box was on my front step. My mailman was a little lax with the signature required issue (although to be be fair he could probably hear the dog going nuts and me yelling at her so he knew I was home).


Is that the most neatly wrapped box you have ever seen?

I started to open it up while Sam was with one of his home therapists. I had to move from place to place as I opened because I knew Maya would go bananas when she realized what was inside. To my surprise, as I pulled apart the layers of bubble wrap, I found a bag of little toys and this little guy. That's a Dream Date Gonzo in case you can't tell (What are you trying to say, Ken?).


Then I pulled out this:


Seriously, the wrapping job was amazing. Neat tape, perfect corners, no wrinkles. I distracted Sam when therapy was over by leaving the shipping box out. This is Sam balancing it on the edge of the table. He is gearing up to watch it drop again and again and again and again...


I left the bubble wrap on the floor to see how long it would take the kids to discover it.


30 seconds.

While they popped bubbles I took a look at this. I didn't try to get Sam to unwrap it. He CAN rip paper but he doesn't understand the meaning of a present and won't attend to the task.


Over the course of the afternoon I set up the iPad with simple apps. One of Sam's home therapists has her own and so I already knew a few things that were worth getting. Maya ended up being the first to play with it because there was a crazy 3 kids yelling at me all at once moment and it gave her something to do for a while.

Sam didn't really "get" it when I showed him that we have our own iPad now. I felt a tiny twinge of jealousy each time I read an "iPost" detailing a kid's enthusiasm over the new device. For us this is going to be a way to try to focus his attention and, hopefully, communicate. I would LOVE it if Sam could develop some recreation skills but I think it is unlikely. When I sit him down, Sam can do simple shape puzzles and discrete trial programs. We are working up to investing in the big guns - Proloquo2go. What is amazing is that the kid who had to be taught to point with his pointer finger in early intervention understood the concept of the touch ]screen right away.

Is this an instant game changer for Sam? No. But I see a lot of possibilities (Ipossibilities? Too corny?) The iPad is an amazing teaching tool that will allow us to work where ever we are without lugging tons of supplies. Hopefully, once we get speech software and Sam is able to hear the iPad speak for him he will find that motivating and appreciate it even more.


I am trying not to drip my wet hair on the iPad.

Here is Sam doing a shape puzzle ( no pieces to throw or eat!!!):


Here he is doing a discrete trial program for color identification (bonus-no flashcards for Sam to fold and chew):


My deep heartfelt thanks to the people at Mission: iPossible and the community of donors without whom this gift would not have been possible.

PEACE.

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

Monday, October 10, 2011

iBecca


For some people, Monday's might be a drag.

I guess I never really understood that. Back when I was a Full-Time employee somewhere, I had a very unique situation. I loved my job. LOVED it. So Monday was never something that I felt jammed up over. I never felt like I was dragging myself out of bed to go to work.

This was once I finally GOT my career going, mind you, which was much later than most people. Early 30's. Prior to that, all the jobs I had never involved Monday through Friday, so Monday morning feelings never were a factor, but there were jobs I really didn't like going to, jobs where I used up all my sick time and then some.

These days? Mondays bring about a dual edge. Lemme explain.

The weekends are ALWAYS harder than the weekdays, because we have Bennett at home all day and all night, with a lot less 'help' in the HHA department, and it is a lot of work as much as it is a lot of joy. It's a symbiotic relationship if there ever was one, though. If HE has a good weekend, WE have a good weekend.

So when Monday rolls around, there is typically a feeling of relief when the house clears out and peace descends (if Bennett had a particularly rough weekend, which he did this past one), but on the other hand, I am home...eeking out a living, barely, doing the things I do, not really employed, my career in limbo, and so Monday brings that home and reminds me that I am 44 years old and since we cannot move and my career is so specialized the road ahead is about an uphill climb as far as how I need to navigate changing careers as you can imagine.

Where am I going with this? Not sure really. I'm just down today, and it's Monday...and that explains why for the most part.

Whenever I feel down, this is usually what I turn to...the act of writing, the act of turning to an online community at large, my friends in the SN community and beyond who I can vent to and try to purge the negative feelings in order to clear my head and try to gain some clarity of focus and maybe figure out some way to manage things in my life a little better.

I get a lot from this place, many in this group, folks I have met through my other blog and certainly have gained a great deal of things from this entire experience, many of which I want to talk about after the rest of the iPosts are wrapped up, which will be this week.

Hard to believe that we are so near to the end of our journey, the conclusion to our first Mission. Wild.


I never actually wrote an official iPost for Becca Kennedy, but I do want to mention something about Becca's iPad and Keri, her Mom. The fact of the matter is, as a group, we never collected any donations on behalf of Becca to donate her an iPad, and we never sent her one.

As I mentioned on her spot on the Recipient Page, she had the excellent fortune early on of being selected to receive an iPad by Gary James, as part of his '50 iPads for 50 States' campaign from his Apps for Children with Special Needs organization. She wrote about the experience in her blog here at Life with Becca.

Since that occurred after I had already revised our list down to 'The Twenty', and all the formats were set and the random order and all that, I just manually added the $550.00 to the donation total to account for the iPad as if it existed, made the notation in the Excel File and changed the images and links on the tabs on the sidebar and the Recipients Page.

In every other way, I treated Keri like any of the other parents, as far as communication inclusion, etc., with the exception of trying to figure out exactly WHEN to drop Becca's iPost in. Wasn't sure when the right time was.

Felt like the right time now. Especially since I was thinking about community and how much it has played a role in my life not just right now, and not just in making this whole project work, but also in helping me get through the darkest days when my journey through all of this started, way back in early 2009.


Like I said above, Keri already blogged about it some time ago, but in addition to all the super stuff she said in her blog post about Gary, the man who spear-headed this donation, Keri had this to say in an e-mail to me.

'All of our iPad folks would really benefit from the stuff he posts, of apps that are out there for SN kids. Basically he spends time reviewing them. He also frequently has “app parties” where he gets the developers to give codes and if you are lucky you can snag codes for free apps (Not just freebie of apps that are usually 99c ). Other apps are sometimes greatly discounted during these “parties” (weekend long web events).'

'Also, not sure if you link to the blog Babies with iPads (they also have a Facebook page). On a near daily basis they link to free iPad apps – those are usually apps that are .99 cents or so that are free for a day. Good to go ahead and snag freebies when you can, as long as you have iTunes and you can later sync into your iPad.'

Apps are very important, as I am beginning to understand. Yes absolutely, you have to have the device to RUN the applications, but the applications are what is going to be teaching your child.

Both sites Keri mentioned are great resources, and at some point we will try to put some links up to more. I don't want to become App Central. That isn't our goal. Our goal is entirely different for each Mission. Besides, a lot of sites have the App Reviews covered and covered well.

As far as Becca's iPad goes...my only regret? Not being able to actually be involved in getting it for her. But that is was purely selfish on my part. Only because Keri was one of the 18-20 or so people who was so instrumental in helping me through those first few weeks and months way back in March of 2009 when Bennett first received the devastating diagnosis of Infantile Spasms.


Back when I used to visit the Infantile Spasms Message Board more regularly, she and I communicated much more regularly, along with a lot of other folks who frequent that space as well. I really need to get back over there again and try to re-connect. At LEAST to see how to link to some of the folks through Facebook. The only reason I even dropped off is just because message boards simply became far less prevalent, for everything.

I used to have one of my own. Still do actually, and I NEVER GO THERE. All my geek toy pals and I moved over to Facebook. I don't even know what is going on there anymore. I have been meaning to update it and change it up to a Private Forum for a few close friends of mine, but who has time?

But Keri, Sinead, Mike Bartenhagen and so many others from that board really threw me a lifeline, and it would have been SUPER cool to have been able to send Becca the iPad. But at the end of the day, it was great that she got it so fast. And that was all that matters really. Besides, it provided me an opportunity to tell Keri what she meant to me in those days and that's fine by me.

PEACE.

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

PS...Just wanted to close it out with this image that I pilfered from Keri's Facebook page, because I loved it so!

Friday, October 7, 2011

iLiam


OK...Skipping ahead a little because of a slight change of scenery and circumstance.

I am sitting in the waiting room of a hospital, while my wife Jen has surgery on her leg. A vein she has to have sucked out or something. Very icky.

But since I was slammed all week and want to still get some posts up and have time now, figured I would work on one now.

But, I do not have all the materials I normally do, so I have to go with what I have access to. Since Eric Olson over at Pressure Support just wrote a post, I can try to copy/paste it with my mobile device and see what happens.

Should be VERY interesting to see what this looks like on my laptop back home. I'll tighten it up visually then if I need to!

Here's Eric...

Last night I sat in front of my computer and tried to write a blog post that I should have written a few weeks ago. I wrote for about 3 hours and when it was all said and done I probably “wrote” about 3500 words. 500 words at a time, each and every one of them eventually falling victim to the delete key. It was all crap but I kept on trying.  For reasons that will become apparent, last night seemed an especially special night to write this post but I just couldn’t get it right.

So instead of summarizing I’m going to use past posts and other sources to fill in the back story. That’s where I keep getting tripped up — the damn back story.

If you would like to know what I’m talking about, you should probably start here.

While you’re at it, please head here and poke around for a while. Don’t worry, I’ll still be here when you get back.

Ok. Got the gist?

Yep. Thanks to the wonderful people at Mission iPossible and all of the wonderful people who donated to Mission iPossible Liam is now the proud owner of an iPad! He was so excited to open it, though truth be told the excitement had more to do with the wrapping paper. Karin and I on the other hand are so beside ourselves with joy at this amazing gesture and the incredible potential it provides for Liam’s development, communication, and fun.

To explain the benefits that the iPad affords Liam in his development would take days, maybe weeks. I just don’t have the words to tell you how monumental this tool really is.

Babies and children learn from play, but how much play is possible if a kid can’t crawl, turn over, or even sit up? Aside from the global delay that Liam’s Miller Deiker Syndrome brings, his low muscle tone makes most toys, including the toys designed for development, near useless. Sure, we’ve got them all and they come out during playtime and therapy time but its the adults hands that affect change with those. The ipad on the other hand helps Liam learn the connection of cause and effect better than any button or switch ever could. The first app that we downloaded is called fireworks. Touch the screen — see and hear the fireworks. You should see Liam play!

Next was the piano app. You’ve all seen it on the commercials. Pretty straight forward and vanilla right? Not when we hear Liam tickling those digital ivories and singing along. That’s right SINGING ALONG!! Sinatra? Buble? Andrea Bocceli? Amateur hacks compared to my boy.

But it’s not all play and work though, sometimes it’s just a matter of watching cartoons on a device that can be placed anywhere and accommodate any of the positions that Liam may find himself in. His stander, his crib, his boppy.

Four months ago I didn’t think I was a part of any “special needs community”. To be honest, even though I had been writing this blog for over a year and I knew about one or two other blogs that talked about kids with special needs, I didn’t even know a special needs blogging community existed. Now I know I’m a part of something bigger. Now I know that when things aren’t going right, I’ve got people to talk to. People who get it. People who’ve been there.

Just a few weeks after the original ipad contest mess happened, Liam got sick and was admitted to the hospital. Ken from Blogzilly and Mission iPossible let everybody know that someone needed a pick me up. On a day when Karin, Liam and I needed them, well wishes and notes of concern came to us FROM ALL ACROSS THE COUNTRY. People I had never met sent word that they were thinking of us just because they knew it would help. That’s community, and it’s a part of this iPad.

After over a month in the hospital I was told that although the order of ipad shipments had been randomly selected and set since before the first device had shipped, a woman I had never met whose child was higher on the list wanted Liam to switch spots with her child and get his ipad first because of all that he had been through. That’s community and it’s a part of this ipad.

And that is why this post has been so hard to write. It’s about more than just an ipad. More than just a toy or a tool. It’s about something bigger than just my family. Bigger than just my son. It’s about being a part of a community of people who look out for each other.  Whether they’ve met each other or not. People who saw an injustice and a promise broken but said here, I’ll help. I’ll fulfill that promise. I can’t thank them enough, for the ipad, for the community, and for the friendship.


****

Last night Steve Jobs, after battling pancreatic cancer for years, passed away. He was 56. His contributions to our society will be felt forever. Contributions not only to technology and computing but also to design and most importantly to communication. Although it’s been years since I’ve owned a macintosh computer that is a decision based more on finances than on preference. I learned to use computers on Macs and have spent most of my life surrounded by apple products. The ipad and it’s use with Liam obviously being the most meaningful.

Thank you Mr. Jobs for all that you brought to us in your time here.



OK...Got some stuff I would love to say, and will, but considering how hard this was to do on this dinky thing I will come back with a follow-up later. Need some more photos, Brutha! (I could not upload the one of yours in the middle on this, it was huge to link to and I can't use the 'compose' function on this thing...)

That and I am operating on ZERO hours of sleep. Doesn't help!

PEACE.

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

Tuesday, October 4, 2011

iThomas


You kind of get the feeling that you are in for a good round of pics and videos when the preliminary message from a parent is a one-liner e-mail that tells you this.

'He's taking to it like a duck to water!'

And then lets you know to expect some material to follow in the next day or so. There's a HEAP of info in that nine word sentence even though realistically there almost shouldn't be. I dunno...maybe it is the Mid-Westerner in me using the metaphor to its fullest extent.

Or is that analogy?

See? There's that Mid-Westerner, unsure of the proper grammar and to be honest I don't actually know where to go to look that up online. Doesn't matter. Point is...let's get ON with it!


Karen, Thomas's mom, wrote something directly to everyone, the community at large, or at least I sort of read it as such. It felt that way, at least it did to me when I was reading the e-mail. So I want to just step back, paste it here, and let it stand alone. Especially because it says a lot about her son specifically, and I have...well let's just say I have an extra soft spot for anyone who has the IS Monster in their history. And many of 'The 20' do...

I'll step back in after that. Here's Karen.

'I do not know where to start...I don't have a blog, and with Thomas being almost 14 years old, it's hard to sum our story up in a nutshell...Nearly 13 years ago I watched Thomas have his first cluster of Infantile Spasms....and it kinda went like this:

Infantile Spasms, ACTH success! Speech disorder, sensory issues, OT, speech, special ed, doing great in school! 4th grade issues, Autism, 10 years of seizure freedom shattered by Epileptic spasms, seizures, meds, side effects, seizure freedom once again! Small steps, progress once again.

Thomas is, by far, I believe, the oldest recipient in this project. He is verbal, but struggles with handwriting and any tasks on paper. He is motivated, captivated, by technology. His teachers have long used the computer as a motivator and reward, and he did very well with computer based reading programs. When I saw the iPad for the first time, my mind filled with all the wonderful things I envisioned Thomas would be able to to with it.


The elation of being selected as a finalist in the original giveaway, and the utter disappointment and loss of faith at that outcome...Maureen and Darcy, thank you for revealing what we all did not want to believe, but needed to know. Thank you for the start to this crusade.

Faith restored by members of our very own community - so incredibly unbelievable.

Ken and Heather, thank you for lighting, picking up, and taking the torch. Thank you for all your hard work, finding donors, packing, shipping, posting, all the while dealing with your own families, work, issues.


Thank you, each and every donor. It is appreciated more than you all will ever know.

As I previously e-mailed to Ken, Thomas has taken to the iPad like a duck to water.

We have found a number of apps that are already helping increase his language skills and functional skills. Attached are 2 videos that demonstrate some of what he is using. Thomas showed his teacher how he used one of the apps, and she remarked "Well, I think we can mark 'Composes sentences with noun-verb agreement' mastered on his IEP" based on what he showed her.


He does not argue, or fuss, when asked to do math practice on the iPad. He very willingly will use the language apps. We are working on creating some visual schedules to help him learn how to do some basic chores-he is more willing to follow instructions on the iPad than he is to follow it on paper. He has even figured out how to search YouTube for videos of his favorite Wii games! And he has a deep love for Angry Birds. :-)

It's been about trust, and faith, and being brought together. It's about a community of people wanting to unlock what we all know is inside each of our kids, and about the wonderful people who are helping us do it.

Thank you so very much-

-Karen'


Well, Karen, I just wanted to say, after having read that again after pasting it here in this blog, that maybe, just maybe, for someone who does not HAVE a blog, you ought to consider creating one.

You definitely have a way with words.

Thank you for sharing them, and for sharing Thomas's story and experiences. It is very uplifting to see an older child on this list, it really is. I know for some people, including my own son, there may never be a possibility of achieving that level of sophistication of communication.

Sometimes that mere fact can be very disheartening for me. It can bring me down tremendously. Tire me me out. Sap my strength.

But that never means I, or anyone else, should ever give up hope. Should ever stop trying, should ever stop looking to bright, shining examples like your son and others for guidance and determination to keep moving forward and exploring all available options for our kids.

I hope you stay in touch, I really do. It would mean a lot.

That goes for all of ya. ;)

PEACE.

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