Just The Way You Are

This is dedicated to my beautiful Ashley...I will always love you just the way you are!

Bus Discrimination

I wonder how many hours I've spent over the last 15 years working on school transportation issues for my kids? I'm sure it would be a large number. Just earlier this year, working through one, what seemed like a relatively simple transportation issue, involved 6 people from the school district and resulted in 62 emails before the issue was resolved.

And here we go again...

Ronnie will be 17 years old in a month. He is a junior in high school. He rides what my school district lovingly calls "special transportation" only because he uses a wheelchair and cannot be accommodated on "regular transportation."

Kids that ride regular transportation usually have to walk a block or two to catch the school bus in the morning and then to return home in the afternoon. There is no door-to-door regular transportation. The doors of the regular transportation busses open up, the kids exit, and once they are out of the street, the bus driver goes on his/her merry way. Of course, the parents of elementary age students often wait at the bus stop for their children, but middle and high school students find their own way home every day.

So, when Ronnie and I decided that it would be ok for him to exit his bus, door-to-door transportation because it is "special" and not "regular", and find his way to the end of the driveway and up our ramp into the house, we didn't expect any problems from the bus driver or aide. He needs no assistance pushing his chair, and he had never once forgotten where the ramp and the door are. In fact, during the summer, he actually goes half a block, BY HIMSELF, to our neighborhood pool.

But apparently we were wrong. The bus driver refused to leave the street in front of our home until she 'saw' me or my oldest son there.

I tried explaining that this level of independence was something Ronnie would need as he transitioned from school to the work force. I tried explaining that he was perfectly capable of getting himself into the house. I even explained that someone was always at home waiting for him, but we wanted him to get used to being more self-sufficient. But to no avail...

This seems a touch discriminatory to me. Students without physical disabilities do not need parental escorts into the house at the end of each school day. So why should Ronnie?

Want to take any bets on how many emails it will take to resolve this issue???

Special Exposure Wednesday

I love the colors of Christmas! Great picture, Chip!

Doctor? I Wonder...

MALPRACTICE - failure of a professional person, as a physician or lawyer, to render proper services through reprehensible ignorance or negligence or through criminal intent, especially when injury or loss follows.

Brooke, the daughter of one of my best friends, recently switched from having a G-tube to having a GJ-tube. For several months, Brooke had been experiencing a great deal of pain whenever she was fed. The doctors did a lot of testing but couldn't come up with a reason for the pain. Their solution was to switch to the GJ-tube.

It sounded like an ok idea, and Brooke does have much less pain using it over the G-tube. But, it comes with a major problem - it gets clogged a LOT. And unlike with a G-tube, a parent or caregiver can't change it. Changing the GJ-rube requires a trip to the hospital or medical office for a radiologist to change it and make sure it is positioned correctly.

Seeing as the tube gets clogged almost weekly, that is a huge headache, and not to mention, lots of time off from work for Brooke's Mom (unpaid time off which for a single mom is devastating.) But if it makes life better for Brooke, her mom is all for it.

So what's the problem? Well, this past Sunday, the tube became clogged again. But a call to the GI doc provided bad news. He and the radiologist were not going to come in on Sunday to change the tube, and Brooke would just have to wait until Monday. But since ALL Brooke's nutrition and fluids are given via that tube, that meant she would quickly become dehydrated or Brooke's mom would have to use the G-tube part and cause Brooke to experience the pain again.

To say this infuriated Brooke's Mom and the rest of us who know and love this lovely little family would be an understatement. If a doctor chooses to treat children with significant needs, and further if that doctor is the one who recommended the GJ-tube, then his job is 24/7. If he wants time off, he makes arrangements for other doctors to back him up. I still find it almost incomprehensible that this happened.

We parents of children with significant medical needs must rely on the medical community to keep our children alive and healthy. So much is beyond our control, and that is a horrible feeling just knowing that we can't make it better.

I, for one, consider this malpractice...just saying....

Stay Strong, Jonah

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!