eSpecially Ben

My friend Rebecca sent this link to me:  Young Boy Reaches Out It is a great story about a sibling helping his brother who has special needs run a race. The Letter

Many heated arguments, comments and posts began when Disney announced that they wer changing their policy for guests with special needs. Once again a rule must be made because a few fools abused the system and ruined it for the people who truly need the service. My hope is that Disney responds to the uproar by designing a program that deters people from committing fraud and requires medical documentation for those who actually need the service. Here is one blog post from another mom - I like her spunk, but I also like her bigger picture view of this situation: Why We Aren't Entitled CNN has an article on line:  Disney Disabilty Policy Changes

My usual roost for writing. Four years ago, I started this blog. I don't remember all the details now, but I do know I wrote a " note " on Facebook about toileting in August 2009 and then had a conversation with a neighbor about writing and blogging. With a lot of trepidation and a little bit of courage, I decided to try it . The title, eSpecially Ben, came to me that very evening. Thank you to eSpeciallyBen loyal readers and followers. I love your comments, emails and likes - they keep me going. The support is phenomenal, the connections are uplifting and the writing is cathartic.  I know I am learning something in the process and hoping I pass on hard-earned knowledge to other families. So pick up your virtual glass of your favorite beverage and clink it to the screen...Cheers! My inspiration.

The training session went well. About 8-10 people attended including the head speech person from the school district and a representative from the assistive technology department. Ben's teacher, the Exceptional Children facilitator, the school OT, PT and SLP were there, along with the principal and dean. Ben's private OT, Sarah, attended as well.  Sarah was extremely helpful to the discussion because she added technical information about positioning and general therapy information. She was able to talk about using the NOVA Chat from a therapist's point of view. It was invaluable having her there. It also prevented anyone from thinking, "This mother is crazy, thinking her son can do all these things."  The session began with a general discussion about why it is important to use the device, At the end, the group watched the video, which was a perfect way to end the session (the video also disproved "the mother is crazy" theory. Thank you Ben.) I was ...

This year Ben has a new teacher and staff working with him at school, and they are not familiar with the NOVA Chat. Last year was a learning year for us: we took our time getting used to the device at home and at school. In an email to the principal this summer, I told her that I was raising the bar in terms of communication for Ben and using the NOVA Chat. She told me to go for it. Luckily, she has been supportive of my initiatives since she took over her position last year. Tomorrow, I am training the teachers, assistants and therapists who work with Ben. I also requested that the district's head speech person and a representative from augmentative communication department attend. I am hoping they will have ideas on how else the NOVA Chat may be used in the classroom throughout the day. I also want them there for accountability - I want this training to lead to consistent use within the school. Our plan is to go over a short handout that explains why using the NOVA Chat i...

Now you tell me - doesn't it look like Captain Kirk might materialize at any moment? Easter Seal/UCP of North Carolina and Virginia has a multi-sensory room at their Charlotte location. Ben tested it out this summer. It was $25 for the use of the room for one hour. The staff member at Easter Seals stayed with Ben and Sarah, the OT, the entire time. Ben refused to enter the room. He went so far as to pull his straps from his chair around his arms, something he NEVER does. (In fact I was lead to believe he did not have that particular skill.) He had to be rolled into the room and eased into the situation. Ahhh...the waterbed. Finally, Ben found something he liked: a large waterbed. For Ben it combined sleeping and water, his two favorite pastimes. If they had a TV playing Bob the Builder, we may never have gotten him out. Ben's OT, Sarah, helped him experience the different elements within the room.  This is what the room looks like before en...

I was not there to see this and it took me at least a week to get the video to play for me. I worked harder when my mom bragged that she was able to open it on two separate devices. But here it is - pretty darn cute and impressive, but what would you expect me to say? The Background Story We want Ben to hold onto his handlebar when he rides his trike. We thought a textured fabric might help entice him to hold on. Sarah, Ben's occupational therapist and the Mary Poppins of OT, suggested we add plastic because Ben likes the noise and feel of it. We used blue duct tape to attach a few plastic pieces to the handlebar. It seemed to do the trick or he was just playing for the camera. Never know with that boy.

As Ben got on the bus this morning, the bus monitor told me that they had a bit of a problem with Ben. Last week, he took off his chest harness and tried to get out of his chair. Not taken by surprise by Ben's antics, it took me about a minute to think of a possible cause and solution: Ben sits alone at the very back of the bus in his Convaid Chair which is strapped into a special system for wheelchairs. He probably wanted to be in a regular bus seat with his friends. Ben is quite the popular man. His friends call his name as soon as the bus rounds the corner of our street. There are many wheelchair positions on the bus, but Ben's spot has been closest to the ramp which is 20 feet away from the action. I recommended that the bus monitor strap Ben into one of the wheelchair spaces closest to his friends. As I said this, Ben gave me a smile. Ideally Ben would sit in a regular seat with a special 5 point safety harness, but that would mean a bus monitor helping him walk up...

We were on the Grin Kids 2011 Disney Trip with this family, and we stay connected through Facebook. This is a great story that has gone viral: Mystery Diner Pays for Meal and Leaves a Note