Stealing From The Blind

You *NEED* to visit this link and read the story. But even better than the story, is the video which accompanies it. It's from the ABC television show, "What Would You Do."

Stealing From The Blind

Wheel Bright Bach (We'll Be Right Back)

I'm a reluctant user of closed captioning now. I've always been deaf in my left ear, but had good enough hearing in my right that I could hear television. But, as my children have pointed out, in recent months I have had the volume turned up loudly enough for our next door neighbors to hear what we are watching. So, I have turned on closed captioning.

It seems as if there are two type of captioning. With one type it seems the captioners (is that what they are called?) have been given a script ahead of time and have entered the captioning. That kind of captioning follows closely with the spoken word - not much of a delay. The second type seems to be 'live' captioning - in other words, the captioners are entering the words just as they are spoken. There is, of course, a delay with this type. But with both types, there are so many errors that it is often difficult to follow along with the TV show.

I can understand to a degree the errors in live captioning, although I would prefer a lot less. But, it's tough to understand errors when the captioners have the scripts ahead of time.

Maybe I just don't know enough about captioning, but so far, it has not been a great experience. So much of the actual show is missed or misinterpreted. I'm really disappointed. So much for universal access.

Thankful Thursday

Today I am thankful...

• that Ashley smiled yesterday for the first time in 5 days. The flu has really kicked her butt, but I'm hoping the smiles indicate that she is feeling a little bit better


• that even with the flu I am still able to function - tube feedings, fluid, nebulizer treatments, etc


• that I am able to work from home and not have to use all my family sick leave the first month of the year


• for hot chocolate and hot tea - very soothing on my sore throat


• that Amy is able to get Ash to eat a little bit of dinner each night


• Gatorade


• that so far my boys have said their exams are not too difficult


• that the sun is finally out - the first time in 5 days. I need some sun!


• for a couple of great new TV shows - The Mentalist and Lie To Me. Since I had to give up CSI since Gil Grissom left, I needed something else to record and watch, and I love Simon Baker!


• for pediatricians whose office is open seven days a week


• for chicken soup - still my favorite cure for colds and flu

Special Exposure Wednesday

Ashley and I both have the flu and are feeling miserable. So for today's SEW picture, I'm choosing to go to a happier time and place - Summer at the lake!



Make sure to check out all the other Special Exposure Wednesday shots at 5 Minutes for Special Needs!

Stevie Wonder Better Watch Out

I've been at home with Ashley for the last few days because she is very sick. I haven't had much time to write a blog post, but since I have committed to myself to post something every Monday through Friday, I was able to find this lovely video to share.

Patrick is blind but more importantly, he is an incredible musician. Listen to this song that HE WROTE!!!

Excuse Me?

Are you a blogger who heavily censors what you post? Or are you more of a Stephanie Klein kind of blogger who seems to share every subject, no matter how private?

I've always felt I was a little in between those two extremes. I do post about my children, Ashley especially, and do share a lot of information about medical conditions and treatments. It seems, though, that one of my Facebook friends thinks I share too much. There are, of course, extenutating circumstances.

Ashley's birthmother located me on Facebook and made me her friend. We had communicated very sporadically in the past via email, but with Facebook status updates, information flows a bit more freely.

Last Saturday night, I worded my Facebook status as "Deborah is worried that Ashley is getting sick again." I received the following message from Ashley's birthmother about that status:

I appreciate that you keep us (me and your friends) posted about Ashley's condition, but please be kind enough from this point on to avoid posting this information on the public walls for everyone to see. I think it is inappropriate that Ashley's medical problems and conditions are being made public when this should, in all fairness, remain a private matter. Whenever I see a post like this it really upsets me and makes me cry very hard, and ruins my days. I already hold enough guilt inside of me to last me a lifetime, and it's something I have to deal with. Please be a little more considerate when posting on Facebook...

Of course, this was the same person whose status update that same night said, "I let (boyfriend) take pictures of my butt...YUMMY!"

All this makes me wonder who should really be censoring what...

Doctor God?

Last August, I wrote about Ashley and her visit to the dentist. I asked the dentist about braces during the visit, and he indicated that it was not worth pursuing because of Ashley’s medical issues. He was making a judgment call – believing that Ashley would not live long enough to reap the benefits of braces. I feel that he was also thinking, “With all her disabilities, why is this mom worrying about straight teeth? No one will probably care.”

I think those of you who read my earlier post had no doubts how I felt about that dentist. Unfortunately, since that time, I have heard similar stories from other parents of children with significant disabilities and/or medical issues.

First there was the mom whose eye doctor didn’t want to discuss removal of her 7 year old child’s cataracts. The child did have significant medical issues and was also significantly intellectually disabled, but he was also happy and loving, communicative in his own way, and very driven to experience all life had to offer. The eye doctor told the mom that it wouldn’t make much difference for the child to be able to see better.

Then, a doctor for a 10 year old girl scoffed at the mention of orthopedic surgery, surgery that would help straighten the young girl’s spine. Like the 7 year old above, the girl has significant medical issues – is tube fed, has a trach, and is not mobile. Many of her doctors couch their treatment suggestions with the term ‘life expectancy’, but this child is defying the odds, and with the dedication and support of her mother, she is proving her doctors wrong.

But we have all met doctors who don’t like to be wrong.

I’m curious – is it unusual that I have heard these three stories? Have other parents experienced something similar? Do you have a story of a doctor who dismisses what you consider appropriate treatment for your child based on your child’s disabilities or expected life span? If so, I would appreciate hearing it…