Wednesday, July 20, 2011

Amazing and Grateful......

Hello all! So much to report today.

If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.

Par for the course, when things get tough, Special Needs parents and friends get tougher!  If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!

We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!!  It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem  enough.

I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee.  That means the world to us.  It also means that we will be helping to do what we can to make sure the others get this chance as well!!!!  :)

I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.

As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60%  - according to those in the "know".  We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him!  The iPad helps us break through that barrier.

We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)

So once again - THANK YOU, THANK YOU, THANK YOU!!!  If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog.  You won't be sorry that you get involved in this one. :)

Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!!  Thanks!


Steph and Christopher

BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!

Labels: , , ,

Monday, July 11, 2011

That's All Folks!

If you look a few posts back, you will see that we were excited to announce that Christopher had won an iPad2 and $500 worth of apps. If have been anywhere in the Special Needs community lately, you know that the worst kept secret around is that this entire thing was a mess.

Mike, the author over at Marissa's Bunny, was the mastermind behind the whole thing. Frankly, I'm too tired to speculate WHY he did it, or the ins and outs of the whole thing. I am leaving the link to Marissa's Bunny over on the side of the page. You can go and read if you are interested.

What we DO know is that this person had no business collecting money on any body's behalf - let alone a charity that ended up not existing. We also know that at least 40 Special Needs families have been affected by this.

Forty families, like us, have planned therapy services, education plans, and even the chance to hear what their child is thinking on getting these devices. For us, we planned on using the iPad instead of purchasing a communication device that costs between $6000 and $10,000, depending on accessories and software. We have a limited amount that we can spend on Durable Medical Equipment per year. Those things include standers, AFO's, Gait Trainers, Communication Devices, Bath Chairs, Etc.

Because Christopher is doing so well in his rehab after his surgery, we have a LOT of equipment that is needed. Equipment that we never thought he would use. Now we are faced with deciding what we are going to do this year - get him standing and potentially walking? Potty training? New Special Needs Car seat? or allow him to communicate on his own for the first time in 7 years?

What ever happens, Christopher will get what he needs in the end - legally! We'll figure it out and move on.

As for him, there is an investigation on-going. We will let the authorities do what they are going to do. I have to assume that his life is going to be not very pleasant in the near future. He will be looking over his shoulder for awhile yet.

If you want to read more about it, you can go on over to Love That Max. Be sure to read the comments section, as it includes comments from Mike himself and a copy of the last e-mail he just sent trying to distance himself from the situation and confirming that there are no iPads.

If anybody out there reading this and was one of the original winners of the iPad, please head over to our friend Heather's blog, Little Wonders. She and a few others are going to try to get these kids what they were promised (the iPads), but they need verification of the winners.  Even THAT has come under question.

This has been going on for many weeks. I have gone back and forth from being mad to hopeful, to suspicious, now just plain disgusted. There are lessons here for all, and opportunity for many others. It is still a sad day in the Special Needs community to think that one of our own (if he IS the parent of Marissa), has targeted our own community for a scam and used his kids to do it.


Labels: , , ,