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

3 comments:

Justine said...

Oh, I do love this post, especially the videos! Karen, what is the addition app that Thomas is using in the first one?

I am thrilled by how this is working for Thomas! Super exciting! And I agree that you should consider blogging. Please let us know if you do.

nchlsgdk said...

Ken and Justine-you guys flatter me. If I had a blog, more often than not it would probably have a more cynical feel,full of profanity and musings about how many stupid people there are in this world...LOL! The addition app is called Turtle Cards and it lets you select the type of problem-addition, subtraction, multiplication,division-as well as the difficulty (one or two digit). Some numbers are harder to "write" well enough for the app to recognize them, but overall I do like that app a lot.
And Ken, it has been a long road with Thomas....but once I got over what he wasn't, I think I was more able to help him be what he can be, if that makes any sense at all. One of the more difficult things was the point where his brother, who is 2 years younger, surpassed him in his abilities. But for the most part,we just keep on keepin on.

kellys said...

Karen, this was so beautifully put—both about the experience of having your boy but also about the first giveaway and then the wonder of Mission iPossible. Thank you for sharing all of that. And so wonderful to see Thomas's happy face!