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!


On behalf of:
The Mission: iPossible! Group


Justine said...

Beautiful thoughts and beautiful child (although I suppose he would probably prefer being called 'handsome.'

I'm so proud of Mission iPossible and the people who made it happen and changed our lives.

P said...

When is the next mission!! I'm so impressed and moved by this post--inspired to pursue a few of my own missions, but eager to keep witnessing this ipossible mission going strong! We hope to get an iPad soon but the iPhone apps are lots of tricky fun already.

I have the same reaction to stories and read archives of blogs from the moment of diagnosis forward when I can...

Peace, happiness and love to all!!

blogzilly said...

Funny you should mention that. I plan on writing about that very thing this week. ;)