Wednesday, March 25, 2015

The Right Direction

Sean, Ben's youngest brother, helps him steer his new bike.

Photography: Joey Haynes

Tuesday, March 24, 2015

The Media Buzz Begins

This is our first media coverage for the 2015 Special Olympics Mecklenburg County Spring Games. Our neighbor and friend works for the local station, WSOCTV and was able to list it in the community events:


Sunday, March 15, 2015

Demolition Done Right


Rebuilding Together Charlotte's Board Members demolished the deck in less than three hours. 

Ben watched as everyone worked. It was like having his very own Bob the Builder episode filmed live. 

Logan and Sean helped out. They were both feeling sad about saying goodbye to the deck. The past president of Rebuilding Together reeled them into the work and made them feel a part of the project.


Friday, March 13, 2015

It Begins...

The container has been dropped. 
Demolition starts Sunday. 
I can hardly believe it.

Monday, March 9, 2015

Knights of the Square Table

Sirs Tom, Mike, Mark, Rodney, Dan, Eddie, Wyatt, Matthew and Brian are all at the top of their field in construction, designing, remodeling and building in the Charlotte and surrounding areas. Early one morning last week, they put aside their own busy lives to discuss a timeline for building an accessible bathroom for Ben. In one hour, they made several decisions: They discussed foundation, dumpster and sub-contractor issues. They volunteered for coordinating the project, framing the structure and donating supplies. Finally, they chose a start date - March 15, 2015. WooHOO!

A few of these men know our family because Ryan was in construction for a number of years and worked directly with them. Most of them do not know us at all, and when the National Association of Remodeler's Industry of Greater Charlotte (NARI) introduced the idea of building an accessible bathroom for a family in need, they volunteered for the project. There was no arm twisting - they wanted to help out.

These are some of the Knights, I mean, companies and organizations donating their time, expertise, labor and/or materials to this project:


I will keep you up-to-date as the project progresses.

Past Bathroom Posts:
April 2013 Getting Just What I Asked for...
May 2013 Bathroom Saga
December 2013 Flushed Down the Toilet
June 2014 A Lesson in Patience and Prayers
February 2015 Ben's Bathroom

Wednesday, March 4, 2015

529 ABLE

In December, the ABLE Act was passed. It allows for families to save up to $100,000 in a special account that will not affect Social Security (Supplemental Security Income) benefits. These accounts will take about a year to get up and running. Each state is responsible for setting up their own program.

Read these articles for more detailed information:

Autism Speaks - 10 Things to Know about ABLE Account

Saving for College - The ABLE Act and What it Means

Investment News: Meet the ABLE Account

NC Legislation

Sunday, March 1, 2015

Play Ball and Other Games

When your kid with special needs does something so unexpected, it makes you remember that the diagnosis delayed development could mean waiting for skills to emerge, interests to blossom and age appropriate behavior to advance. Even as parents, we tend to forget that our child's brain may develop at a different rate possibly exhibiting growth when least expected. When it does happen, it hits you right in the face, but in a good way.

This morning, we were all hanging in our playroom. We were enjoying the space after decluttering the room and donating bags of toys to the local thrift store. Ben was with us and he reached up to a bin full of balls and chose a junior size football, one that we use all the time outside. He took the ball and handed it to Sean.

Under my breath, trying not to squeal with excitement, I told Sean to play ball with Ben. Logan and Sean did not understand the significance of this moment. Joining us in the playroom, locating a ball, choosing a ball, getting the ball, handing it to his brother are multiple steps of a thoughtful and remarkable process. To the brothers, they were handed a ball by their other brother. No big deal, Mom.

Several weeks ago, I came home from a morning run and everyone was asleep except for Ben. The TV was on, videos were pulled out of the cabinet and our one "video system" was 5 feet from the cabinet, next to Ben's comfy chair.

After a family interrogation and careful detective work, I determined what happened:

Ben turned the TV on by himself (wow), without knocking anything over on the TV cabinet (hard to believe, but no other way it could have been turned on).

At some point, Ben rifled through the cabinet below the TV and grabbed the Bob the Builder video game. He brought it to his chair hoping that someone would set it up and play. I know this because Ben did not chew the cord, a normal and expected activity. If he wanted to just chew it, he could have done that in front of the TV, no need to drag it across the room.

This Bob the Builder video game was purchased for $7 at TJ Maxx about seven years ago, probably one of my best purchases ever. It runs on batteries and plugs into the back of the TV. It has 4-5 games that can be played. Since this incident, Ben has pulled this game out several times. We try to engage him in pushing the buttons, but he really prefers to watch his brothers play.

I am not a fan of video games, but if Ben becomes interested, I may become one quickly.