No Vacation Here

I saw a story on TV yesterday morning about Cumberland Island off the coast of Georgia. Also known informally as Carnegie Island due to the fact that the Carnegie family owns a good portion of the island and has several mansions there, Cumberland Island is a barrier island facing the Atlantic Ocean.

The only way to get to the island is by ferry or private watercraft. And once there, you will find no cars or other motor vehicles, just bicycles and people walking. And from the pictures on TV, it appears as if none of the roads or paths are paved.



It appears to be a beautiful, serene and interesting place - exactly the kind of place I would love to vacation with my children. But we probably can't. Island which allow no vehicles and have no paved roads are not very wheelchair friendly. It's a shame because I would truly love to visit.

Whenever we plan a trip or vacation, ensuring everything is wheelchair accessible is at the top of my list. Also on the list are things like proximity to hospitals and doctors, pharmacies, and appropriate transportation.

We've been able to find places to vacation, but we've also found places that we can't go, places I really wish my children could see.

What about you - do you know of vacation locations that are disability friendly - places where children with complex medical needs are welcomed - towns or resorts that have truly committed to access for all?

This summer we are planning a trip to Hershey PA. I'm sure the Hershey Park will be accessible, but I would also love to visit the Amish Country. I don't know what to expect there, but am thinking it might not be too accessible. Have you visited there and found it to be accessible and welcoming?

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 Visit To Bear Creek Lake

Just like the flowers in my garden, I believe my children need lots of sun and fresh air to be their best. Making that happen gets a little tough on these shorter Fall and Winter days. The sun is almost ready to set by the time they get home from school each afternoon!

So, on the weekends, I try to plan activities that will get everyone outside. As long as the sun is shining, even if it is cold, we try to do something that keeps us outside for several hours each weekend day. This past weekend, we visited one of our favorite places, Bear Creek Lake State Park.

The Park is only about an hour from our home, and this time of year, it's not the least bit crowded. Here are some pictures from yesterday's outing:













What do you do to make sure your children get enough outside time in the Winter?

Hailing a Cab (maybe)

Although we've never made the trip, my family would love to visit New York City. We've never been in a city that large or in my opinion, that exciting, and a visit one day is very appealing to us. But I may now have to rethink that...

You see, New York City's Mayor Bloomberg, thinks accessible taxis are a waste of time and money. And of course, one cannot visit NYC without at some point having to take a cab. Here are a few of Mayor Bloomberg's comments about accessible cabs:

"Their suspension is much worse, so the average person riding in them finds them really uncomfortable,"

"If you're in a wheelchair, it's really hard to go out in the street and hail down a cab and get the cab to pull over and get into [it],"

Mayor Bloomberg also said that accessible cabs would inconvenience able-bodied passengers, and noted that hacks don't like them because they are so spacious that the drivers can't establish rapport with riders - and get smaller tips as a result.

The sad fact is that only 231 of the city's 13,000 taxis are accessible to people with wheelchairs. And since my family has two wheelchair users, I'm guessing a trip to NYC is not in our future...

According to the New York Daily News:

Champions of the handicapped immediately ripped Bloomberg's "insulting" riff.

"The mayor's completely out of touch," said Assemblyman Micah Kellner, a Manhattan Democrat who was born with cerebral palsy. "When was the last time Mayor Bloomberg used a New York City taxi or a wheelchair?"

Added Edith Prentiss of the Taxis For All Campaign: "It's a sad day for New York City when a mayor works so hard to deny people like me the right to take a taxi. It's wrong, it's indefensible,and it won't stand."

So where do you stand on this issue? Do you think New York City needs more accessible cabs, or do you think the Mayor is correct - it's not a realistic solution? Keep in mind as you answer that question that the decisions made in New York City have the potential to drive decisons for smaller cities - maybe even yours.

(image courtesy of David Handschuh, New York Daily News)

The Lure of the Open Road

Virginia Tech University has been working with the National Federation of the Blind to develop a vehicle which can be driven by someone who is blind. From a prototype in 2009 to driving the Daytona Speedway in January of this year, it’s truly amazing to watch.

The Today Show did a feature this past weekend on the car and the driver, and if you didn’t know better, you’d swear the driver was not blind.

Here is a YouTube video that explains the technology behind the vehicle.



And here is an article that appeared in Collegiate Times

When Ashley finds out about this she will be pestering me to get her one!! She is my child who would love to jump in the car and go driving everywhere. She is also the one who would probably get a speeding ticket within the first week of driving.

But the child I want to convince to learn to drive is Ronnie. He’s not blind, but he believes that he cannot ever drive because of his spina bifida and the fact that he uses a wheelchair. I tell him all the time that there are special hand controls for cars, and he just signs, “silly, no there aren’t.”

So where does a person that needs to use hand controls for a car learn to drive? Perhaps if I could show him such a place, he would believe me. Confidence and belief in his abilities are not his strongest points, but I aim to change that!

Oh, and one more thought, how would a blind person get a driver’s license if they can’t pass the eye test given at DMV???

Where Am I?

I used to travel a lot for work and I always had recurring nightmares about being in a strange city, walking around, and getting horribly lost. Those nightmares would keep me from exploring some really fantastic places, and now I regret that. If only IPhones and IPads and such had been around then...

Google has announced two new apps, specifically targeted for people who are blind and who must find their way around a city. Think GPS for the walking crowd...

The apps are called WalkyTalky and Intersection Explorer.

WalkyTalky reads out not only the directions as you walk, but also the intersecting streets that you pass by. Not only will it help with your bearings, but it'll give you a greater understanding of the city—the next time someone mentions meeting on Maple Street, for example, you may well remember passing it previously.

Intersection Explorer isn't quite as useful, but I imagine it would help steel my nerves about my upcoming journey before even leaving the house. You can virtually walk through Google Maps, with the app reading out the directions of the proposed journey ahead.

It's great that someone was thinking about the Blind when these apps were developed, but honestly, I think everyone, disabled or not, could benefit.

Now let me go talk to the only two people in my house who have an Idevice - my two teenage sons - and see if they can download the apps!

Baltimore - Day 3

As day three of our long weekend dawned, we all slowly got up and enjoyed the free breakfast at the Homewood Suites hotel in which we spent the night. All you can eat, free breakfasts is great when you are traveling with three teenage boys!

We were all pretty worn out but decided to stop by Ikea on the way home. We had never been to Ikea, but I have heard so many good things that I was anxious to check it out. It didn’t disappoint!

I found about a 100 things that I loved, but only a few that I decided to buy. I did see some chairs that I like, but I will need to take the van back up there to get them. One of my favorite areas was their little food section. Lots of Swedish delicacies were available, and we stocked up on cookies, blueberry jam and pear soda.

After Ikea, we opted for lunch at Famous Dave’s Barbecue. The food was great but the facilities were not. The tables were so close together that it was almost impossible to get Ronnie’s wheelchair to our table. He finally decided to transfer to a regular chair and asked the waiter to store his wheelchair somewhere out of the way. That worked and we all enjoyed our last meal of the mini-vacation.



I enjoyed the trip tremendously but getting home was wonderful also. I was seriously in need of some Ashley-time, and although the hotel beds were great, they just couldn’t compare to my own bed.

Bedtime came early as did time to go to work the next morning. I am now looking forward to this coming long holiday weekend and a little more rest at home!

Baltimore - Day 2

Day two in Baltimore saw us checking out of the marvelous Hilton Hotel after one of the best buffet breakfasts I’ve ever seen (I don’t think I have ever had a better croissant in my life!) Oh, how I didn’t want to leave the air conditioning for the 100 + degrees of heat, but we did and headed to Camden yards for a tour. For a mere $9 per person, we and approximately 10 other people were lead through the bowels of the stadium, stopping to ooh and ahh over the press box, the party rooms, and the private boxes.







The boys got to sit in the dugout. We learned all the ins and outs of the stadium design. We heard how delicate the turf is and how water will seep right through it, thus keeping the need to cover the field during rain showers to a minimum. We saw the double decker warm up areas (I know there is a more technical name for this, but I forget what it is), and saw the turf farm area, a place where replacement grass grows to fix divots in the field.





We learned that ALL the seats in the stadium are power washed TWICE after each game. Do you know why? Because of all the peanut shells. Peanut shells, we were told, are the hardest things to clean up. It made me a little guilty about eating peanuts at the game later that day.

We saw the television studios and the miles and miles of HD cables. We learned that only special mud from a secret place in Georgia is used to rough up the baseballs, and we saw the World Series trophies that the Orioles had won.





The list just goes on and on, and now you may understand why $9 per person seems like a great deal, at least to people who are baseball-obsessed like my family.

After the tour, we had a few hours to kill, and did so by going to the Geppi’s Entertainment Museum. Rooms full of very old comic books – toys from the early 1900’s – TV shows like I Love Lucy and Howdy Doody – and of course, the newer things like Iron Man, Superman, and other super heroes. I love the museum – we had been there the year before also – but I always leave feeling a tad bit older because I recognize, and in some instances, even played with things similar to what is displayed in the their ‘old’ toy room.



After the museum, we stood in line waiting for the gates to Camden yard to open – just us and 40,000 of our closest friends. By the time we finally got to our seats, I think at least 15% of my body mass had melted from the heat. But not to worry, we quickly replenished with hots dogs, fries, ice cream, and lots and lots of beverages. We were also quite blessed to have our seats in the shade, even though shade when the temperature is 102 and the humidity is 98% doesn’t make a huge difference.

One really positive thing about Camden Yards is that they do not isolate people with disabilities. Our local baseball stadium, for example, has a disabled section. It is the only place wheelchairs can go. At Camden yards, the wheelchair seats are fully integrated with the regular seats. Kudos to the stadium designers for that!

The game was long but very good. The Nationals led for a while and then the Orioles made a comeback. There was enough action for fans of both teams. After the game, we made our way to the car and through the traffic and headed back to the Virginia side of the beltway battle.



Just as dark settled in, we checked into the Alexandria Homewood Suites, into a room that was the size of a small apartment, and just took it easy until bedtime. Day three had us heading home, but with a quick stop at Ikea first. More on that tomorrow….

Baltimore - Day 1

When we set off for Baltimore last week, I was curious to see what our travel experience was going to be like. Though we have traveled with Ashley and her wheelchair in the past, Ashley is capable of walking short distances. If we couldn’t find a curb cut, it wasn’t a big deal – Ashley could just stand up, step down the curb and then get back in her chair. But with Ronnie, there is no standing – it’s the chair all the time.

The first area we visited was Baltimore’s Inner Harbor. The boys had their hearts set on having lunch at ESPN Zone, so you can imagine the disappointment when we arrived and discovered the restaurant was no longer there. We settled for Hard Rock Café.

The Hard Rock Café had little to offer a deaf teenager, but I think Ronnie was quite happy when he realized I was going to let him order an ice cream sundae for lunch! We finished lunch – I took the requisite tourist picture – and we headed out to the Inner Harbor.



The line at the aquarium was much too long to wait in considering the temperature was pushing 100 degrees, so we explored some shops and watched some high school dancers in the plaza. Locating the handicapped entrances to the buildings was a bit of a challenge, but once inside, we were always able to find an elevator.

We were even able to find Ronnie a pair of Converse shoes to use as pool shoes. Since he has no feeling in his legs, it’s very important to protect his feet when he swims. Otherwise they could get all scraped and cut without him even knowing it.



After lunch and a little exploring, we headed to our hotel to check in. It was a lovely Hilton right in the heart of Baltimore. It was contemporary and quite impressive, and the rooms that Chip had booked for us overlooked Camden Yards. But the most important thing about the rooms? The delicious air conditioning!!

After getting settled into the room, Corey and Ronnie decided to check out the pool. Imagine my surprise when I saw the lift at the end of the pool. Although we didn’t need it, I was impressed that the hotel folks had been aware and considerate enough to realize the need.



Here are a few pictures from the swimming experience:







After a good dinner in what we thought was a restaurant but what turned out to be more of a bar, we settled into the hotel rooms to await the start of the Baltimore Orioles/Washington Nationals baseball game. While we couldn’t see the whole field, we were able to watch the game simultaneously on TV.



I think the boys had a great time in their own room, and everyone was looking forward to actually going to the game the next day. More later…..

Friday and Saturday

FRIDAY:

Ashley's MRI went ok. She's been having these every 6 months for the past three years, and I hoped that over time she would get used to the hospital, the people, and the procedure. She seems to have done that to some degree.

The first couple of years, she was so anxious when we arrived at the hospital that she was given a medicine to relax her prior to the actual anesthesia. That worked well except for one thing. When she had that medicine in combination with the anesthesia, she was really, really slow at waking up. That scared me to death.

But the last time (prior to Friday's visit), she seemed relaxed enough to skip the first medication. We still have a bit of a struggle getting her onto the stretcher, but after the procedure, she woke up quickly and was ready to go home. She was almost back to her normal, happy self by the time we arrived home.

On Friday, the staff moved quickly, and we didn't have to wait long. Because of that, I decided to skip the first medication again. She was fine until she saw the stretcher. There was no way she was going to get on it.

I tried bribing her with the nurse's watch. I tried my sweet mommy voice. I tried my stern mommy voice. Those things were all a waste of time because Ashley was NOT going to get on the stretcher.

Keep in mind that Ashley is 15 years old and as strong as a WWF wrestler. Even though I tried to physically get her on the stretcher, it was a task that was doomed to failure. At that point, the anesthesiologist suggested we try a different kind of medication - Ketamine. He said it was a shot and would start to work in about 3 minutes. I agreed, and at exactly 3 minutes, Ashley got loopy. It still took the anesthesiologist holding her top half and Chip, my 19 year old son, holding her bottom half to get her on the stretcher, but finally she was there and nodding off.

I worried that she might have a tough time waking in the recovery room after the Ketamine. She woke up pretty quickly but she was loopy for almost the rest of the day. Like a drunken sailor....

Chip and I got her home and she spent the rest of the day on the couch. I'm not sure how I feel about the Ketamine though. I may have to do some research before agreeing to use it again. I really didn't like seeing Ashley so out of it for so long..

SATURDAY:

We couldn't have picked a worse day to go to Busch Gardens. I figured it was early enough in the season that it wouldn't be crowded yet. What I didn't take into account were the thousands of middle school music students from across Virginia who were there to do something musical....Not sure what, but really sure that it was super crowded.

Each school district had their students in matching teeshirts. I stopped counting the different colors of teeshirts the students were wearing, but it was like a giant rainbow had vomited all over the park.

Now I like middle school students, but I have decided that I only like them in small numbers - less than 100, for example. It was really difficult pushing two wheelchairs through the crowds, and the lines at all the rides were just too long to wait in. Add to that the 85 degree temperature, and our first visit of the season was a disaster.

We have season tickets, so we will be going back frequently. But, since this was Ronnie's first visit, he was not very happy. He wanted to stay and do more, and no amount of reassuring him that we would be back would work.

Hopefully he will forgive me, and maybe, just maybe, I will spring him from school early one day and we will go without the crowds!

Pulling the Plugs

I always wonder during a thunderstorm if the lightning is finally going to hit our house because we have so many electrical ‘things’. There are of course, the lights, the TVs, the video games, and the stereo. I’ve lost count of the computers we have – ones from school, my son’s computer for college, his computer for home, his ‘old’ computer that he has set up as a server in the house, my home computer, my work computer. And we can’t forget the cell phones and the IPods and the kitchen small appliances.

See, we probably do suck way more than the average amount of electricity. But all that is going to change for a week in December.

As a family Christmas gift this year, we are UNPLUGGING our life. We have rented a cabin in the mountains, a cabin with no TV, no computers, and no cell phone service. The cabin is on the edge of a forest, and we are hoping that our neighbors will be bears and deer, instead of garbage trucks in the morning and motorcycles in the night. We will go to bed when we feel like it – get up when we feel like it – go for hikes in the woods – walk beside the lake on a freezing winter morning. We will cook soups and stews and sit around in flannel while we eat it. My boys will learn to light a fire in the fireplace, and how to set it up to keep warm during the night.

We will play card games and board games and maybe, just maybe, will sit around and talk!

And….I will not be blogging for that week - the week between Christmas and New Years. My commitment to my blog has been to always write every Monday through Friday, and I have done that for three years now. I think it is high time for a vacation!

Don’t you?

Today I am thankful for the technology that delivers electricity to our home, and for the ability to shut it all off!

Harvesting

Saturday was cool and rainy but it was also the day we had scheduled to drive to Carter Mountain Orchard. The apples and pumpkins didn't care about the weather so we didn't either!

Carter Mountain is near Charlottesville, Virginia. It is a family tradition to drive up early in October and stock up on apples and hot apple doughnuts (my primary reason for wanting to go!). Although traffic was heavy in the Charlottesville area due to a University of Virginia football game that day, we arrived early at the orchard and beat most of the crowd.

We first made our way to the pumpkin patch, and Chip and Ashley did a fine job of surveying all the options before making the perfect selection. We then had to explore the colorful gourds and all the varieties of apples before purchasing our dozen warm apple doughnuts. We enjoyed them at a picnic table while listening to a live bluegrass band. The adults in the group even sampled some of the orchard's signature wines.

Finally, we loaded our purchases into the car and started the trip down the mountain. All in all, it was a wonderful start to yet another Autumn!




Today I am thankful for my down comforter. It was nice to snuggle under it last night.

Baltimore - You Rock, Even For Those Who Roll!

The boys and I had a wonderful time in Baltimore this past weekend. Chip wanted to celebrate his high school graduation by going to a Major League baseball game, and to make it all even more special, his favorite team, the Atlanta Braves were playing Corey’s favorite team, the Baltimore Orioles. How could I say no to that?

We headed up Saturday morning, spent the day exploring the Inner Harbor area of Baltimore, and checking out Camden Yards, the stadium where the game was being held on Sunday. We had some great meals, explored the area known as Little Italy, and then checked into our hotel to rest up for the next day.

For those readers who know me well, you can probably guess that I was also checking out everything for accessibility. Even though Ashley wasn’t with us, that mindset of accessibility is always with me, and in Baltimore, I was pleasantly surprised.

Everything in the Inner Harbor area was accessible. The restaurant where we had lunch, ESPNZone (the boys were in heaven), was also very accessible, and Ashley would have loved all the TV screens and flashing lights.

Our hotel, Homestead Suites (a Hilton Company chain), was also nicely accessible. The bathroom was large enough to accommodate a wheelchair, and even though it wasn’t represented as a handicapped accessible room, the shower did have grab bars and the rest of the suite had wide hallways. Right outside all the elevators were containers of antiseptic waterless hand cleaner, a nod to the H1N1 flu I’m sure, but still a welcome feature for someone concerned about germs.

The most outstanding accessibility surprise was Camden Yards, home to the Baltimore Orioles. The bathrooms were very large and very clean. The staff was very welcoming and professional. And the number of handicapped accessible seats boggled my mind. They completely surrounded the field from one side to the other (see the light teal seats on the chart above). Those seats, like all the seats at Camden Field, had a great, unobstructed view of all the action. I’m not an Oriole’s fan, but this was the absolute best baseball stadium I have ever seen.

So all I have to say is “Well done, Baltimore, well done!”

"I never want to not be disabled"

My kids and I love the snow, but unfortunately we don't see very much of it around my part of Virginia. Then again, maybe that's why we love it - because we don't have to deal with piles and piles of dirty snow for 6 months out of every year. We get the pretty, magical snow that comes and goes in a few days, hopefully long enough to get a day or so out of school or work.

But parts of my state do get lots of snow, and one of our favorites is Wintergreen Ski Resort. If ever we are needing a dose of snow, Wintergreen is only an hour away.

One of the things I like most about Wintergreen is the owner's committment to providing a ski experience for everyone - even, dare I say it, people with disabilities. In addition to sponsoring the Virginia Winter Special Olympics each year, Wintergreen also has an adaptive sports program. Here is a great article that recently appeared in a Winston Salem, NC newspaper about the program, and one of its participants. I *love* her final comments in the article!

Adaptive Sports at Wintergreen

Day Two - Virginia Beach Adventure

Dolphin and shrimp - yes, it was a good day. Even though the line to our favorite breakfast spot (Pocahontas Pancakes) was too long to wait, we did find another typical beach pancake house and filled up before heading to the dolphin boat tour.

As I anticipated, Ashley was VERY anxious about actually boarding the boat. I had hoped the boarding would go a little more smoothly than last year's trip because I had called ahead and asked if the boat trip was accessible. I was told that it was, but what that meant was that two strong men would lift Ashley in her wheelchair onto the boat. If you are familiar with people in wheelchairs and understand how they feel when someone puts their hands on the chair, you know that more often than not, it is not well received. And believe me, it was not well received by Ashley either.

Once Ash had settled down from the men-handling, she did seem to really enjoy the trip. While she is unable to see the dolphin, she loves to feel the wind on her face, smell the salty sea air, and feel the rhythm of the rocking boat. She even seemed to enjoy licking the saltiness off her lips.



After a short nap back at the hotel, Ashley and I went for a walk by the beach, and that was followed by dinner with my brother and niece. While Miss Amy took Ashley back to prepare for bed, Chip and I headed to the beach with my brother - the photographer - so Chip could have his senior year pictures made. I think we will have so many good ones to choose from that I will have an extremely hard time choosing!

Tuesday begins the preparation for the conference and family retreat. The hotel facilities are in no way what we need for a successful family retreat, but that is a subject I will address in my next post. Suffice it to say that if you are planning a conference on the subject of severe disabilities, AND you know you will have attendees and family members with severe disabilities, perhaps checking out the facilities before the actual start of the conference would be a good idea.

Day One - Virginia Beach Adventure

Traveling with children is difficult at best. Traveling with children with significant special needs is a Herculean task. I feel like I was instructed to pack up one third of my house, fit it all into the family MINIvan, and arrive at our destination with happy, smiling faces. Oh, and in the process – don’t forget anything important. Well we didn’t and we did – we didn’t arrive with happy, smiling faces and we did forget some important things.

Then throw into that stressful situation a deafblind child who understandably gets a little anxious in strange places, and you can count of the first day of any such trip to be more than just a little stressful.

We left home yesterday morning for our trip to Virginia Beach. I am part of a conference planning committee which is hosting a conference called Pathways to Possibilities. The conference is targeting professionals a family members who support children with significant disabilities, and in particular, deafblindness. The conference doesn’t officially start until Tuesday evening, but we came to the beach a couple of days early for a vacation, the only vacation we will get this year.

So assuming I can find Internet access somewhere (and my hotel room is unfortunately not one of those places), I will still try to post every day this week. In the meantime, we are going to try a dolphin watching trip today if we can get Ashley onto the boat. Last year, she loved just such a trip once we got her on the boat – and that required the strong arms of the boat captain hoisting her aboard while she screamed like a wounded coyote.

My only other mission today is to find shrimp – lots and lots of steamed, spiced shrimp!