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!"

Pushing Independence

I LOVE, LOVE, LOVE the new show on the Sundance channel called Push Girls. It's a reality show about four women who are friends and who happen to use wheelchairs. It reminds me a bit of the show Switched at Birth on ABC Family in that the focus of the show is not wholly on disability. Disability happens to be a part of the women's lives, but only a part.

I asked Ronnie to watch Push Girls with me last night because I wanted him to see how independent the women are. Ronnie is used to people doing a lot for him. But if he wants to meet his goal of independent living anytime in the future, he needs to switch his perspective. I believe watching this show might help.

After the show was over, he told me he like it and thanked me for telling him about it. Whoa! Might that signal a bit of progress????

Here is a great review of the show by NPR...

Push Girls - A Fresh Take on Women Riding on 26 Inch Rims

Any Direction You Choose

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.

Dr. Seus

I’m so happy that Ronnie has access to team wheelchair sports through Sportable. He is a very athletic person, and always seems so excited to play basketball, lacrosse, track and field, etc. He never had that opportunity before joining our family, and he certainly doesn’t get it at school. But even more than the athletic opportunity, I like that he is meeting people who use wheelchairs and don’t let that stand in the way of living life to its fullest.

Last week at lacrosse, the coach was talking about one of the players to Ronnie. The player is a man in his late 20’s, and it was obvious that sports are his passion. But the coach was also relating how this gentleman was late arriving because he was repairing his roof. Ronnie looked a little surprised at that, and the coach just said, “well, he’s a family man and he has to take care of his family.” I saw a light bulb go off in Ronnie’s brain.

Ronnie has met people who drive and unload their own chairs, people who have children and who care for those children, people who travel to exotic places, people who have many different types of jobs, and people who can be every bit as competitive on the playing field as a person without a chair.

Ronnie is on that threshold on which all people with disabilities stand, even if only for a moment. Ronnie can choose to have others help him the rest of his life, or he can decide to take care of himself and do whatever it takes to reach that goal. He is more than capable, but I think he often needs convincing. Somewhere along the way in his tumultuous life, he learned to be a taker and not a giver. I believe it is my parenting job to change that, and the folks at Sportable are helping me more than they realize!

Do It Right....Or Else

Just when I thought I only had one school bus battle to fight, another rears its ugly head.

Now what, you ask? Well, for the last three days of last week, Ronnie had what we thought was a substitute bus driver and aide. I did find out late Friday afternoon that they are not substitutes - they are the new staff for his bus.

Apparently, the bus driver is 'new' as Central Office told me. And that newness is certainly apparent since she can't drive the friggin' bus!!

We have a nice long, wide paved driveway. Every bus for the last 14 years has been able to stop at the end of the driveway in such a way that the wheelchair lift can be set down with no problems. Ms. new bus driver, however, can't seem to do that. Last Wednesday, Thursday and Friday, she either overshot or undershot the driveway. That wouldn't be too terrible if we didn't have deep ditches on either side of the driveway!!

All three days, the wheelchair lift was lowered into the ditch and the bus aide just stood by and watched as Ronnie struggled to get to level ground in his chair. Fortunately Chip was out of college and met Ronnie's bus and was able to help him.

I called the main transportation office and they said they "would talk to her." Wonder how things will go today? I'm going to leave work early just so I can be home when his bus arrives. If the driver doesn't make it safe for him to exit the bus, I'm going to be very, very angry and make a scene...

Stay posted for an update tomorrow!

Tell Me What's Right While Doing What's Wrong

Ahh, high school. Those years when teachers and staff try to mold young minds for the challenges of the future. A time of showing the difference between right and wrong. A time to hopefully build some compassion, some sense of justice, and to learn to live together peacefully.

Yea right...

What high school should not be, in my opinion, is preaching with a "do what I say not what I do" attitude. Yet it happens in ways both small and large. We have high school coaches videotaping naked girls in the locker rooms. We have female teachers having sex with young male students. We have school personnel being arrested for embezzlement. And we have this - arguably not as significant as the other things I just listed, but still showing a careless regard for both the law and the rights of others:



Mr. school employee/door repairman, you took the last handicapped-accessible parking space. No, you did not have the handicapped placard that gives you the right to park there. But yes, it was right in front of the building where you had to fix a sticky door. And yes, it saved you from toting your bag of tools (no bigger than a student's backpack) across the parking lot. But it meant my child had to get out of my car and into his wheelchair in that busy parking lot.

Thanks for making his life more difficult and less safe. And thanks for the wonderful message you sent to the other students at school. I'm sure that those students won't feel much remorse when they park in a handicapped spot. You showed them today that it is alright...

Take Me Away

I've always loved traveling. Whether it was for a camping trip at the beach or a plane trip to Florida or a cruise through the Caribbean, as a young adult I could plan vacations at the drop of a hat. All that changed though once I had children with special needs.

Since I first adopted Ashley and until now, the biggest trip we have ever taken was to Disney World in Florida. And that was all planned out by the Make A Wish Foundation. They arranged for all our needs, including anything related to accessibility. Now that I am on my own for arranging vacations, and now that I have two children in wheelchairs, I'm just overwhelmed and can't seem to make anything actually happen.

We have made some trips to a rented house in the Outer Banks of North Carolina, but even then we have to make sure we find an accessible house, and I have to have names and phone numbers for medical professionals and pharmacies in the area. I want to be able to plan something bigger - a trip to a far away destination - a place none of us have ever been to but have always wanted to see.

I found a website that may be able to help with the planning. It's called TravelinWheels, and it's tag line states, "Encouraging Disability Travel Around the Globe." There's lots of information on the site and even reviews about different locations. What I would like to know if whether or not any of you have ever used TravelinWheels or a similar service for planning a vacation? If not, what have you done on your own to ensure a fun and accessible vacation for yourself and/or your family?

Have you found locations that are more accepting and accessible than most? Do you have lists of places a person in a wheelchair should definitely avoid? And, if you have gone of vacations and needed the services of an interpreter or medical professionals, what have your experiences been finding those people?

Please share!

A Market Only For Some

Ahhh, Black Friday - that time when we witness both the worst and the best in people. And sometimes, the worst and the best of accessibility. Just trying to move among the crowds with two children in wheelchairs is challenging. I really don't need retailers to do things that make it even more challenging, but it seems that is what I find every year.

In fact, two years ago, we tried to shop at a store named World Market. We couldn't get into the store. Here is why:



The ONLY curb cut anywhere near the store is just to the right of the front of the store. One might assume that you could then turn left after going up the curb cut and proceed to the front door of the store. But no....

There is a street sign between the store front column and the curb, completely blocking the sidewalk. Our second attempt to enter involved going behind the column to get to the front door. Nope...didn't work either because the store used that to contain extra merchandise boxes.

We were completely and totally excluded from the store.

After taking everyone back to our car, I went into the store to mention the problem to the store manager. To put it nicely, he didn't seem too interested at that point. Several months after the rush of Black Friday, I went back to the store and mentioned the problem to an assistant manager, an assistant manager who assured me they didn't want to exclude anyone from their store. That was well over a year ago.

So, we tried again this year. EXACT SAME PROBLEM!

You know, one of the TV news channels in my area posts pictures of people who are arrested each week. I wonder if they would be interested in posting pictures like this one of World Market and other establishments who limit access???

Can't Get In

I really like that Ronnie is in an inclusive setting at school. I think all children with disabilities should be. But, an interesting dilemma arises from time to time, and it has both a positive and a negative aspect.

Many of Ronnie's non-disabled peers treat him no differently than any other friend. That is the good part. In fact, because they don't think of him as different, they often invite him to their homes to 'hang out'. The negative aspect is that they don't consider things like how he will actually get into their home, or how he can use the bathroom at their home.

Very, very few homes, at least in my area, have wheelchair ramps. Many have very steep outside steps at both the front and rear of the house. As such, Ronnie cannot get into their homes. There have been times when the parents of his peers offer to lift him in his chair and carry him into their homes. I appreciate that, but there is just something about it that bothers me.

And if he does get in the house, if his friend's bathroom doesn't have grab bars, it will be very difficult for Ronnie to use the bathroom. What that means is that we do need to schedule visits around his cathing schedule. Again, not an optimum aspect of a visit.

We usually work around this situation by inviting Ronnie's peers to our home. But I know he would really like to be able to get out and visit at someone else's home from time to time.

It's just one of those things that I wish I could make better, but I really don't know how...

Visualize This

Sometimes I like to visualize in my mind what it must be like to be in a wheelchair like Ronnie or Ashley. Doing so helps me figure out accommodations that can be made to help make their travels a little easier. Today I was attending a business-related conference at a local hotel and decided this would be a good time for a visualization.

Unfortunately, the first leg of my visualization trip was not so good. I had to park in the parking garage for the hotel. I tried to pull into a handicapped parking spot, but the access aisle was being used for storage. See the picture below.



This is not an usual sight though. In the past I've seen piles of dirt, piles of snow, snow moving equipment, and grocery carts piled into the handicapped parking spot and access aisle. The way these concrete things were positioned, it was impossible to open the car door. I pulled out and found another parking spot. A person with a wheelchair may not have been able to do that.

Then my visualization took me up the elevator to the hotel lobby so I could register for the meeting. All that went well. The registration counter was lowered and had I been in a chair, I would have had no problem signing in and picking up my materials.

The next problem came when I tried to move through the hallways of the conference area. There were vendors lining each side of the wide hallway, making it not so wide. Throw in approximately 800 people, and traveling in a chair would have been nearly impossible.

There would have been excuse me after excuse me, tap-tap-tap after tap-tap-tap trying to get people's attention so I could move past. I think I would have just given up at that point, and now I understand better why Ashley and Ronnie can both get so frustrated in crowds.

Finally I found the room I was supposed to be in. It was a large banquet hall filled to capacity with round tables, each seating 8 people. There was hardly room to walk between the tables, much less move in a wheelchair. Had I really been in a chair, I would have had to just wait by the door for the entire presentation.

After the keynote, we were to move to breakout rooms for the next session. Mine was in a room with two aisles of chairs, each having 10 chairs in each row. Again, there was no room to move a chair down the aisles. I would have to park my chair either in the front of the room or the very back of the room. Either would have marked me as 'different' to the crowd.

After that session, it was back to the banquet hall for lunch. I thought I had it figured out this time. I would go in early in my chair, before the room filled with people, and that way I could get to the far side of the room to sit with my co-workers. But I forgot something very important. Had I done that, I would have been trapped in the room until everyone else left at the end of lunch. A trip to the restroom would have been out of the question.

And so the day continued - too many people, not enough room, and doors to heavy to handle while trying to also move a chair. I found myself getting very frustrated and wanting to just yell at someone. Again, I now understand Ashley's and Ronnie's behavior a little better.

But there was one thing that really, really surprised me. How could there be almost 1000 people in one location and not one of them have a physcial disability? Does that seem a little odd to you?

Ruh Ro

Now what?

When Ronnie came home from the baseball game last night, we noticed that his wheelchair was broken. There is a bar that goes behind the seat and connects to the two vertical bars where the handles are.

That bar broke off!



How in the world does something like that happen? I've called the company we bought it from, and they are supposed to have their service person give me a call. But something like this is a huge inconvenience to a person who relies on a wheelchair.