eSpecially Ben

Ben was accepted by the Ace & TJ's Grin Kids program this year to visit Disney World. Ben has graciously asked the rest of his family to chaperon him. Woohoo! We are going to see Mickey! If you just started reading eSpecially Ben, please go back and read about our history with Ace & TJ. July 2010 Ocotber 2010 March 2011 We will keep you updated on our Disney plans. So far the kids have watched the Disney Vacation DVD no less that 15 times. To say they are excited would be an understatement. Ryan has plans to have us at the gates at 7am each morning with itinerary ready (I am not making this up). For Ben, he is not going to know what hit him! Check out the Grin Kids Website - your family may qualify to participate in the program. And if you just want to support the organization, Grin Kids fund raises throughout the year for this program. If you are interested in seeing how you can donate or volunteer , there are resources here .

Hmmm...If I knew such a controversial topic would get me so many comments on Facebook, here and private email, I would have made up some others before this. Most of the feedback I received was that I should have told the camp director right when it happened. And looking back now, perhaps I should have. With the circumstances the way they were, I really think my best option would have been to ask the speech therapist to come forward with the story. He had all the information - when, where and who. And he would have done it. And it could be argued that, really, he should have done that immediately without even telling us first. Thank you all for your comments, ideas, thoughts and suggestions. Everyone was supportive and worried for Ben. I know I learned from the experience and would approach it differently if something similar were to happen again. Although I hope your family does not have to broach a subject such as this, but if so, you will be better prepared to act because you rea

A few weeks ago I wrote about our family's dependence on Ben's Convaid Stroller and how my realization of this addiction made me change a few things in our lives. For one, Ben takes his second dose of seizure meds earlier in the day. I believe that the meds contribute to Ben's wildness and sleeplessness. This change seems to have worked. We have not seen many 1am and 3am's lately! Next, I called Ben's new school to see how we can get Ben on the bus without going in the stroller. I want Ben to walk up the stairs, with assistance, and then once off the bus at school, go directly into his walker.  There are many "steps" that need to happen for this to actually happen, i.e. Ben has to get tested by a school physical therapist to see if he meets their guidelines. I am hopeful that even if he is not approved by the start of school, I will at least insist that he is met with the walker at school. I want the new school's staff to visualize Ben as a wa