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!
Hugs!
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!
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!
Hugs!
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: Advocacy, communication device, iPad, therapy
posted by Stephanie at
1:34 AM
7 Comments:
So happy for you! :) Yayyy!
Congrats! I'm so excited for you, but most of all for Christopher!
Happy tears for you and Christopher!
Here's the real truth of it, Stephanie, not only is Thank You enough, it isn't necessary. I'm not blowing smoke, either.
I was talking to Heather a few says ago, and we were talking about retrospection and how we perceive our kids disabilities, as both our kids, just like Christopher, have or have had multiple issues to overcome.
Without any hesitation we both had instantaneous consensus that watching our kids experience the Infantile Spasms was probably the most devastating thing we experienced, and the one thing that really took it out of us the most. And our kids as well. The damage that was done, and is done, by seizures to the brain and to communication, is just so glossed over...it's maddening to me that there is not more awareness of a LOT of things in life, but especially IS.
I follow a blogger named Danielle writing about her son named Trevor, beautiful boy,not sure if you follow them. I follow a lot of other kids too, but I brought that one up specifically because its been great to watch him react to the iPad and see D's explanation of the apps.
It will be just as rewarding to watch your relationship with your son evolve in much the same way. It's a gift to me, to all of us, to be a part of that in a small way.
LOVE! GO CHRISTOPHER!
Sweet!!! I'm so happy Christopher finally has this. I gave up waiting for Mike to come through and we purchased one for my girl Ashley it has been amazing. Proloquo2go is a lot of work to set up but so worth it. Enjoy!!!!
Hurray for you and Christopher! I can't wait to hear more about how the iPad helps you all. :)
If you haven't seen it already. For apps, check out www.a4cwsn.com (a4cwsn=Apps for Children with Special Needs) for videos on how to set up and use apps. Gary does a great job. On facebook, he often gives away apps that can help as well.
deb (jake's mom, one of the 40)
Post a Comment
Let us know you were here! Thanks!
Subscribe to Post Comments [Atom]
<< Home