Friday, January 30, 2009

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.

Thursday, January 29, 2009

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

Wednesday, January 28, 2009

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!

Tuesday, January 27, 2009

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!!!

Monday, January 26, 2009

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...

Friday, January 23, 2009

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…

Wednesday, January 21, 2009

Thankful Thursday

Today I am thankful...

  • that my oldest son is such a compassionate and generous person. He is a very good man...

  • that Ashley enjoys being pampered as much as I enjoy pampering her! She especially likes having her hair blown dry and styled.

  • that the daughter of my friend, Jerry, survived an horrific automobile accident. She's got a long road to recovery ahead of her, but she is going to recover.

  • for the very yummy Weight Watcher's pineapple angel food cake Amy shared with me

  • that I was able to get so much work done last Friday and Monday. It was a holiday for everyone else, but the lack of interruptions gave me the time to accomplish a lot. I'm almost ready for the auditors...

  • that my elderly neighbor likes the soup I make for him

  • that my van is still chugging along - it's a day to day challenge

  • for the sweat pants and sweatshirt I don every night when I get home from work. So snuggly and warm...

  • for the great lap desk Chip bought me. It's perfect for sitting on the couch and writing on my netbook

  • and finally, for our new President and the feeling of hope and renewal that is growing in America

Tuesday, January 20, 2009

Special Exposure Wednesday

I know it's only a cardboard Obama, but it was still very exciting for Ashley. All Monday evening and early Tuesday morning, Ashley practiced saying 'Barack'. The closest she got was 'bwog', but for a deaf child who has only learned to say about five words using a very tedious and difficult method called Tadoma, 'bwog' is huge!

This is a new beginning for America, and Ashley celebrated with a new word! I'm proud of her and of our country.

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

Monday, January 19, 2009

"Don't Come To Washington, D.C.", They Said

Are you a person with a disability or the parent/spouse/friend/caregiver of a person with a disability? Were you planning on attending the inauguration today in Washington, D.C. ? If so, I’m sure you’ve heard by now that the event is far from accessible.

The Joint Congressional Committee on Inaugural Ceremonies, in fact, has issued warnings that some people with disabilities interpret as a message that says, "If you have a disability, please do not attempt to attend the inauguration."

On its Web site, the committee warns that handicapped parking will be limited and not close to the Capitol, and that there will be fewer drop-off points for people using wheelchairs. Accessible seating is limited for those with tickets to the swearing-in ceremony. And, "persons in wheelchairs or utilizing walkers should be aware that they will need to move across bumpy surfaces, grassy areas and possible icy areas (depending on the weather)."

"This is like a big, bold sign that says if you're a person with a disability, this is not your event," Richard Simms, executive director of the D.C. Center for Independent Living said.

The inaugural committee can't work crowd-control miracles, but as Andrew Imparto, president and CEO of the American Association of People with Disabilities has said, "We'd hope the congressional committee could figure out a way to accommodate everybody. Our experience is that when accessibility is taken seriously, it makes for a smoother event all around."

I know soon-to-be-President Obama is very, very busy with the life-changing events that have been put in motion, but I would like him to remember the story he told of his father-in-law in this video he made during his campaign. More than anyone, Barack and Michelle Obama should be sensitive to this issue…

Magic Marker Monday

Although I have never participated in Magic Marker Monday at 5 Minutes For Special Needs, today I had no choice! It doesn't get much better for Ashley - a day off from school, magic markers, some construction paper - ahhh, life is good!

Too Fat To Adopt?

Adopting a child can be a very daunting task. I’m not talking about parenting an adopted child, but rather, the process of being approved to adopt and then finding a child. Potential parents can have no secrets. Your adoption worker and their agency are going to want to know what your salary is, your bank account information, what type of house you live in, your psychological history, what at least three of your friends think about you, whether you have ever been convicted of any crime and especially crimes against children, and your health history.

It’s a good thing that all my adoptions happened before I was diagnosed with Lupus and Rheumatoid Arthritis. I don’t know if I could have gotten approved had those conditions been diagnosed prior to my wanting to adopt a child. I honestly cannot imagine what my life would be like if Ashley, Jessica and Corey were not in it. So I wonder what would have happened if my health had not appeared perfect.

A family in the UK doesn’t have to wonder. Although they passed almost every investigation of their adoption agency, they have been denied the right to adopt. Why? Because someone feels the husband is too fat. Here is a link to the news story.

And this is not a one-time occurrence. A woman in Australia also was denied the right to adopt because she was considered obese. Here is a link to that story.

How do you feel about these stories? Is it better for a child to stay ‘in the system’ instead of with a Mom and a Dad, one of whom is considered obese?

My question is who decides which medical conditions are deemed ok for an adoptive parent and which are not?

Thankfully, in my case, my diagnoses weren’t present during my adoption home studies. I know I am prejudiced, but I can’t imagine anyone being a more suitable and loving parent to my three special adopted children than I have been. It worries me that the families in the two stories above may never have the chance to say the same thing.

Thursday, January 15, 2009


I had a couple of different blog entries I considered posting today, but both of them were on pretty serious subjects, perhaps controversial subjects. But I have decided that I would rather end the week on a lighter note.

So, I found this video that seemed to embody exactly how I feel after a long week at work, a week that contained several doctor visits, a painful cortisone shot, and an equally painful IEP meeting.

Here's hoping your weekend is happy and that you can stay warm!

For more incredibly cute 'sleepy' videos, check out this link!

Wednesday, January 14, 2009

Barry Baker's Story Must Be Told

I am not doing a Thankful Thursday post today - for the first time in two years, I am setting aside the list of things for which I am thankful so I can tell you story of Barry Baker. It's a story that must be told...

Barry was a 59 year old man, a man with both intellectual and physical disabilities, but a man making a life for himself.

He lived alone, and like many of us, wasn’t the best housekeeper in the world. He was overweight, and after having two hip surgeries, he also walked with crutches.

But he worked. He had a job he went to each day and every Sunday he went to his favorite bar to relax.

On November 29th of this past year, Barry was at home alone and began experiencing chest pains. He knew what to do – he called 999 (the UK version of 911). The dispatcher immediately sent an ambulance and told Barry she would stay on the phone while he waited for the ambulance. But then Barry collapsed. The dispatcher stayed on the phone and listened – listened to hear the door open and the EMTs to arrive.

What she heard astonished and sickened her. The two EMTs came into Barry’s home, saw his messiness, his disability, and his weight. At that moment, they decided his life was not worth saving. So, they stood there and let him die, deciding to tell everyone that he was dead when they arrived.

The dispatcher heard it all. She immediately turned over the tape of the event to her supervisor. The police were called. The two men were arrested, and charged with “willfully neglecting to perform a duty in public office.” Not murder – neglecting to perform their job.

This story sickens me and scares me. We must share Barry’s story, and I am asking you all to do that. Let’s not let Barry Baker’s story end this way.

Here is a link to the newspaper story.

Tuesday, January 13, 2009

Special Exposure Wednesday

Ashley got a small fish tank and two orange (her favorite color) fish for Christmas. She loves looking at them swim around. Because she only has a small amount of vision in one eye (and is totatlly blind in the other), she must get really, really close to the tank, but the fish don't seem to mind!

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

Monday, January 12, 2009

Push Me Pull You

How do you decide what skills to push your child to master and which skills can take a back seat?

When I first adopted Ashley, she was 2 years old and I was new to the world of special needs parenting. I felt I had to push on everything. Ashley at 2 years old had never had early intervention services, never had physical or occupational therapy, never had a parent who encouraged her to reach beyond herself. So, my initial approach was to flood her with experiences.

We had speech therapy twice a week, occupational/feeding therapy five days a week, and vision services three times a week. All that was in addition to what I worked on with her at home, and believe me, I tried to make everything into a learning experience. Then one day, my son, Chip, then seven years old, told me while I was practicing ABC’s with Ashley’s Spaghettio’s during feeding therapy that not EVERYTHING had to be a learning experience. That son of mine has always been wise beyond his years…

As Ashley grew, I have backed off a little – at first, very very little, but still I always kept what Chip had said in the back of my mind. I learned to relax more. I learned that Ashley could work on skills just by having fun. I learned that sometimes she just needs to do nothing. And I think the result is that Ashley is much more well-rounded than some of her equally severely disabled peers.

Believe me, I still work very hard to help her with skill development. She still has a lot to catch up on, and probably always will. But we also have fun – we do things just for the sake of doing them, not because she will have the opportunity to learn. I’m letting her school district, her teachers and aides take more of the responsibility for her education, while I make my major responsibility parenting.

Ashley is a lovely and unique child, and I have made the decision to celebrate that uniqueness. The last thing I want to do is make her feel that she always has to do better and do more. She is doing the absolute best job of just being herself, and I couldn’t ask for anything more.

De-GRYS of Love!

Some of my coworkers make fun of me when I tell them I have to watch Extreme Home Makeover each Sunday night because it always gives me the opportunity for a ‘good’ cry. They can’t understand why I want to end each week crying, but it’s the ‘good’ part of the crying that makes the difference.

Last night’s episode featured the Grys family, and no other Extreme Makeover show touched me the way this one did.

The Grys family has fostered 250 children over the years. And, not just any children. They specifically request the infants with the most severe disabilities. The children that are placed with them usually have just the slightest of chance of survival. But the family keeps coming back for more.

Currently the family included the mom and dad, two twenty-something birth children, two fifteen year old twin girls diagnosed with Fetal Alcohol Syndrome and an eight year old boy diagnosed with brittle bone disease and dwarfism.

Three things about this show impressed me more than any of the others. First, the dad was wearing a shirt that said, “Who are all these kids and why are they calling me Dad?” I’m sure that sense of humor helps sustain this family through even the most difficult of times.

Secondly, the dad also made the statement, “If someone tells me a kid will never be able to do something, I will spend the rest of my life proving them wrong.” I’m thinking this man is the triplet I never met. I have a twin, but his making that statement shows me my mother must have had triplets and just forgot one at the hospital.

And finally, at the end of the show, the builder for the family’s new home made the statement, “If you dream it and believe it, you can make it happen.” I love that person and I don't even know her.

God bless you, Grys family, and everyone at Extreme Makeover Home Edition who helped make this family's dreams come true.

Thursday, January 8, 2009

My Cat In The Closet

I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.

She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”

For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.

She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.

Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.

Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.

Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.

But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.

Hope is my cat in the closet…

Wednesday, January 7, 2009

Thankful Thursday

Today I am thankful...

  • for the big smile on Ashley's face when she saw the school bus this past Monday morning. She skipped down the driveway. I didn't even know she knew how to skip!

  • for my new little netbook computer. Less than 2 pounds and more powerful than my old laptop

  • that Amy, Ashley and I were able to surprise our friend, Lynnette, with a drive-by birthday cake dropoff last weekend!

  • for a crockpot full of beef stew waiting for my family after a cold, rainy day at school and work

  • that Rocky the dog is doing much, much better with his separation anxiety. I have been able to cut his meds in half, and hopefully within another month, he will be off them completely

  • for my neighbor, Mr. Ed, who smiles and waves each and every time he sees us

  • that last weekend - the end of my two week vacation - I was able to organize both my closet and dresser drawers as well as Ashley's. To me it feels really good to be organized (this is where the people closest to me start laughing and calling me anal retentive)

  • for a steaming bowl of oatmeal with peaches for breakfast each morning

  • for the two good books that my oldest son bought me for Christmas. Normally I am a very, very fast reader, but these books are so good I am trying to slow myself down. I don't want them to end

  • for my job, even though I grumble about getting out of bed each work day morning

  • that my car windshield wipers are still working even though they won't return to 'home' when I turn them off

  • for strangers who smile at you when you pass - even on cold, rainy mornings. Those are people I would like to get to know

Special Exposure Wednesday

Tennis ball muffins? Nope, but it is a really ingenious way to teach Braille to someone.

Ashley's occupational therapist came up with the idea, and her intervener (the eyes and ears for someone who is deafblind) has perfected the idea.

Teaching Braille to a child with even a tiny bit of vision is difficult because the child will want to use what vision they have. The tactile nature of Braille does not lend itself to that, and the result is that the learning is inhibited. Ashley's little bit of vision is deteriorating, so to maximize her learning Braille, she has begun with the muffin tin.

The muffin tin, just like a standard Braille cell, has 6 dots (or holes in the case of the tin). When tennis balls are put in the holes to represent the Braille dots, Ashley can not only see the Braille but it is building the foundation for feeling the Braille as her eyesight deteriorates.

Absolutely ingenious, in my opinion!

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

Monday, January 5, 2009

Happy Belated Birthday, Louis!

Happy birthday, Louis Braille! The 200th anniversary of Louis Braille’s birth on January 4, 1809, is being celebrated this year, and to blind people around the world, it is indeed cause for celebration.

Louis Braille became blind at the age of 3, when he accidentally stabbed himself in one eye with an awl, one of his father's workshop tools and got an infection. His other eye went blind from the infection spreading to it. But that was not enough to stop the remarkable young man from inventing a system of reading that would change the world.

In 1821, a Captain in the French Army, visited the school that Louis Braille attended to show the children his invention, called "Night writing." It was a code of 12 raised dots and a number of dashes that let soldiers share top-secret information on the battlefield without having to speak. The code was too difficult for Louis to understand, and he later changed the number of raised dots to 6 to form what we today call Braille.

Today, thanks to the ingenious invention of Louis Braille, blind children and adults throughout the world can read and write as well as their sighted counterparts. Please join me in also celebrating the braille code, named after its young inventor, and the expanded possibilities for literacy, independence, and self-expression Louis Braille opened up to blind people everywhere.

Want to see you name in Braille? Check here...

Sunday, January 4, 2009

Looking For Love

I wrote last week about my concerns for my daughter, Jessica, finding a job. I am also concerned about Jess finding love.

Jessica is 18 years old, and quite interested in the opposite sex. She always has been, but as a young child we attributed her extreme interest to her diagnosis of Reactive Attachment Disorder. One of the symptoms of RAD is sexually provocative behavior at a young age. But now her interest is different.

The objects of Jess’s attention are boys her own age rather than men that are much older and in roles of authority. She seems genuinely interested in developing an age-appropriate relationship, dating and eventually falling in love. My concern arises because Jess’s cognitive age is more that of a 6-7 year old.

How do I ensure that she is not taken advantage of by a boy that is her age chronologically but much older cognitively? How do I help her understand what things are appropriate and what things aren’t? How do I explain a healthy sexual relationship to someone who is essentially 6-7 years old?

I want Jessica to fall in love, get married, and have children if that is her dream. But I don’t have a clue how to help her realize that dream. She doesn’t even seem to understand the biology of her body although I and her teachers have worked for years to help her understand. And as I mentioned in my earlier post, I don’t know how her aggressive outbursts will allow for a close relationship, when in fact, the outbursts get worse as she gets closer emotionally to people.

I know these issues must have been tackled by many others, and it is their advice I am seeking. Or, if anyone is aware of other resources that might help Jessica with these issues, please let me know.

Thursday, January 1, 2009

No Resolutions But a Whole Lot of Hope

“Hope is the thing with feathers that perches in the soul and sings the tunes without the words and never stops at all”

—Emily Dickinson (1830-1886), poet

I'm not going to make any resolutions this new year. I've not had the best track record in past year with that. So instead , I've decided to embrace HOPE as my theme for 2009.

I will blog throughout the year on the subject of hope - my hopes for my family, for myself and my friends, for people in despair and those who are oppressed - for peace, for the world's people to come together in harmony and not war - for solutions and not problems - for renewal - and for resolution to those things that have historically destroyed hope.

I will start today by sharing this video from the Foundation For A Better Life...