Famous

My city has been hosting the National Veterans Wheelchair Games this week, and that has provided many opportunities for Ronnie and his team mates to interact with the veterans.

Kid's Day was held on Wednesday, and Ronnie and the other kids were each paired with a mentor. Check out this page on the Department of Veterans Affairs website where Ronnie's Kid's Day mentor shared his thoughts:

"Man, that kid is incredible!"

Tears for the Future

Writing about today's subject is very difficult for me. Just thinking about this subject can get me tearing up, but it's something I need to figure out. I would like your ideas and comments.

Often parents of children without disabilities make arrangements with friends or family to care for their children in the event of the parent's untimely death. Call it being a Godparent or a guardian, it's usually not difficult to find someone. But imagine the child has disabilities, severe disabilities, and as the parent you have no family members able to step in. And, it's probably not too difficult to also imagine that there are few if any friends willing to step in and provide the intensive care your child with disabilities will need in the event of your death. What do you do?

And on top of that, imagine how difficult it will be for the child, a child who can't understand that their parent, their whole world, just one day disappeared. What would you do?

I've been to meetings about special needs trusts. Money is one thing, but finding someone willing and able to care for your child with disabilities is another thing. And then imagine that your child is growing up, is over the age of 18 or 21. What then? Your child still needs care every bit as much as they did when they were 5 years old, but they are still unable to direct that care themselves.

There are absolutely no easy answers, but at this point, I would take any answer. Yes, I have an adult son, a son who is just beginning to embark on his life. As much as I know he loves his sister, could I ask him to assume her care for the rest of his life? I know I don't want to, but I haven't found another answer yet.

Advice? Ideas? Tissues....???

Special Exposure Wednesday

After the monster storm on Monday, we had a little visitor! We've lived in our house many, many years and never seen a frog. He must have had a wild ride on the wind!

More Than Baseballs Flying

Well we had quite the exciting Monday!

Our local baseball team, the Richmond Flying Squirrels (yes that is really the team's name), was scheduled for their only noon game this season. I decided to take half a day off from work so the boys and I could go. We are all baseball nuts in this family (get it- squirrels, nuts - I crack myself up sometimes).

I met the boys at the stadium, and we settled in for a sunny and hot time. And things stayed that way for 7 innings. Then we saw some angry looking clouds rolling in. They were coming from the west, the part of town where we live. I had received emails about a severe thunderstorm warning for our area, and so we decided to duck out of the game early and head home. That was a pretty good idea.

The storm rolled through and brought with it a tornado. The tornado took out a wall at the stadium, cut power, and blew out windows. Remarkably no one was hurt. But I was very glad that we weren't there and trying to find a secure place to get into with a wheelchair.

The ride home was interesting also. We've survived two major hurricanes in the last few years, and the winds, rain, and hail from this storm looked just like those hurricanes. My two next door neighbors both lost trees, one of which took our a power line. Driving through the neighborhood a little later, we realized just how lucky we were. There were large trees down everywhere, many on houses. We have no power - along with 150,000 other people - but that is a small price to pay.

Hopefully tomorrow won't be quite as exciting....

The view to the west as the storm approaches:



One of my neighbor's downed trees. So very minor compared to other damage in the neighborhood:

Sport

First there was basketball. Then came lacrosse. Now it's softball...

(Do you know why the ball in wheelchair softball is bigger than the normal softball? I didn't. I was told it is because the players can't wear gloves because they need to be able to push their chairs - thus the ball has to be bigger so they can catch it. Interesting!)

Exactly How I Feel, James!

Finally Friday - and I feel good!!!  Hope you do also!

A Slot

It's been ten long years.  Years spent missing supports that could have really made a difference.  Not enough assistive technology - not enough environmental modifications - not enough family training - not enough recreation - not enough personal support.  But all that has now changed.

Ashley has finally been granted a 'slot' on our state's Medicaid Developmental Disabilities waiver.

I shouldn't complain too much though because had she been on the waiting list for the Intellectual Disabilities waiver, we might be looking at even another ten years.

I met today with Ashley's service facilitator for the waiver, and we laid out a menu of services that will serve to benefit Ashley immensely.  From increased attendant hours to assistive technology to high intensity day support to prevocational services and family caregiver training and even environmental (home) modifications that would benefit Ashley as well as the opportunity to obtain even more services in the future.  All these things will go a long way towards preparing Ashley for the future, and will also go a long way to removing a small part of the worry I face each and every day.

I know there may be people who say we take advantage of taxpayer money - that we consume more than we should in the way of services.  Well, I'm a taxpayer also, and in addition to caring for my children, I am more than willing to have my tax dollars support your family member with a disability.  Ashley, and the many other people with disabilities in our communities (and note, I said 'in our communities', because that is exactly where they belong), are a vital part of this thing we call the human race.  They have needs, they have wants, and they have rights - JUST LIKE EVERYONE ELSE.  They have skills, they have talents, and they have relationships filled with love and respect - JUST LIKE EVERYONE ELSE.

Neither Ashley nor I sit home, do nothing, and just reap the financial rewards of public assistance.  I work, and I fully expect her to work when she leaves school.  We volunteer, we give back, and we strive to make the world a better place for everyone. 

At this moment in time, Ashley needs more supports than a person without disabilities.  She has a right to those supports, and she deserves them.  She and I both realize that we are blessed that the supports are available, and neither of us will ever take them for granted.

At this moment in time, a small portion of the weight on my shoulders has lifted.  For that, I am eternally grateful.