Ignorance At Its Best

My buddy, Esbee, over at the Life in Forsyth blog, emailed me to let me know about one of her blog posts that she thought might interest me. Her comments in the mail definitely piqued my curiosity. She said she was still ‘sad’, two days after the event she detailed in her blog.

I immediately went to read her posting, and while I understand ‘sad’, what I was when I read it was ‘angry’. I moved a little closer to ‘sad’ the more I thought about it though. Sad that even in this day and age so much ignorance still exists about people with disabilities – sad that people have no trouble sharing their ignorant views, even if their views might emotionally harm someone, especially a child.

Take a few moments and read Esbee’s post and let me know what you feel. Then come back and let met share one of my weekend encounters. I’d also like to know your thoughts about that.

Sunday afternoon, Chip, Ashley and I went to a local bookstore – one of the big ones with a name you would recognize. Chip had selected his books for purchase, and I was pushing Ashley in her wheelchair through the aisles while waiting for Chip to pay.

As I went down one of the aisles, a young African American girl – probably about 14, the same age as Ashley – turned and stared at Ashley. It wasn’t just a short stare – those kind I have learned to ignore most of the time. This girl stared as we approached her – as we passed within 12 inches of her – and then turned and continued to stare as we started to pass by. This was a stare I just couldn’t ignore.

I asked the girl is I could help her with anything – did she have any questions? She got an angry look on her face which I admit did start to make me angry. I said, “You were staring so much at my daughter that I thought you might have some questions you would like to ask.” She made a disgusting noise and walked away.

As I went to the end of the aisle and turned back towards the cash register, the girl was angrily whining to her mother about the ‘weird lady who told her to stop staring.’ The girl’s mother was immediately irate and approached me in typical trashy talk show form and asked me what my problem was. She told me that I shouldn’t talk to her daughter, and that if I had anything to say, I should say it to her. Well, okay then.

I said, “This is my daughter, Ashley. She is 14 years old. She is deafblind, has three brain tumors, and needs this wheelchair to get around. Are they any other questions your daughter might like to ask?”

She said, “You’re a crazy b*tch and stay away from my daughter.”

I rolled Ashley away, and as they family left through the parking lot, the mother turned and used a type of sign language we all know.

Funny thing though, Ashley signed also. She signed “crazy b*tch and pointed outside the store.

My Country

To me, the fight for the rights of the disabled has always been a civil rights issue. Yesterday, my brother sent me a link to an ADA video that speaks to that. It's a little long, but broken into segments so you can start, stop and come back later. But it is definitely well worth your time....

My Country, an ADA video

Thankful Thursday

Today I am thankful..

• that Ashley's last two weeks of ESY services are over. The service provider was incompetent and Ashley hated going each day.


• that Friday is just a day away - I NEED a weekend


• for my friend, Jackie, who will come and cut the grass when I have weeks like this one


• for an evening with no chores and a really good book


• that I will get to visit with Jessica this Saturday when I take over all her new school clothes. She is going to be so excited!


• that I only have to work two days next week and then will be taking a loooong Labor Day weekend


• for my herb plants which have just grown like crazy this year. Does anyone need any basil, oregano, rosemary or thyme?


• that Kristian got kicked off of More To Love this week. Her whining and "I love you so much" (after just meeting you three weeks ago) was more than I could take.
  

First One Then Another

Regardless of your politics, it’s hard to ignore the impact Senator Ted Kennedy has had on this country. The news of his passing so close on the passing of his sister, Eunice, has saddened me greatly. I firmly believe that the lives of people with disabilities have been positively influenced by both Kennedys.



Several years back, when the reauthorization of IDEA was being formulated, I drove to Washington, DC to meet with Senator Kennedy. I wanted to give him a first hand account of what it was like to raise a child with significant disabilities. I wanted him to hear about the joys and the struggles, the fight for an education, and all the medical battles. Honestly, I expected my meeting to be relegated to an aide, someone who would politely listen and promise to share my thoughts with the Senator. But Senator Kennedy himself met with me for about an hour.

I was, of course, quite intimidated, but he immediately put me at ease. It was impossible to ignore the fire in his eyes when he discussed people with disabilities. This was not a man just saying what he thought I wanted to hear. He believed with his entire being that both the life and the education of children with disabilities could be improved. And he went on to fight for that improvement.

So today my heartfelt condolences go out to his family, and I firmly believe this nation, and especially people with disabilities, has lost a warrior. Rest in peace, Senator.

Below is the eulogy Ted Kennedy delivered at his brother, Bobby's funeral. The words are as heartfelt and significant today as they were then.

Chill, Baby

If I hear one more time that the primary purpose of high school education for children with disabilities is to prepare them for work, I am going to scream. I wrote last week about Ashley not getting History or Science in high school because ‘she doesn’t have a history or science disability.” Her IEP draft was full of ‘vocational’ goals and objectives, and if the school district staff asked me yet again if I had ‘connected’ with vocational rehab agencies for Ashley, I might just have told them where they could stick their sheltered workshop job.

I understand that our children with disabilities may need a little more time to prepare for the workforce, but seven freakin’ years??? That seems a tad excessive to me. Heck, I can start listing the names of many non-disabled high school students who were not prepared for adulthood and the workforce when they left high school. And, are our children to have no other focus in their lives once they turn 14 years old? That’s pretty sad if that is what the school district believes.

Why shouldn’t our children with disabilities be entitled to the same work-life balance being promoted for those without disabilities? (Work-life balance can also be applied, imho, to education-life balance).

According to a survey conducted by the National Life Insurance Co., four out of ten employees state that their jobs are "very" or "extremely" stressful. Those in high stress jobs are three times more likely than others to suffer from stress-related medical conditions and are twice as likely to quit. The study states that women, in particular, report stress related to the conflict between work and family. Do you think our children with disabilities can also suffer from stress? Heck, their lives are often nothing but stress.

The number of stress-related disability claims by American employees has doubled according to the Employee Assistance Professionals Association in Arlington, Virginia. Seventy-five to ninety percent of physician visits are related to stress and, according to the American Institute of Stress, the cost to industry has been estimated at $200 billion-$300 billion a year. What do you think the costs will be if a person with a significant disability experiences stress and burnout?

Ashley loves art – and music – and plants – and shopping – and traveling – and reading – and math – and science. Restricting her enjoyment of those things during her remaining school career – approximately seven years – will not a happy future employee make. And don’t even get me started on the preconceived notions about the type of work our children with significant disabilities will be targeted to perform. Trust me, if you ask Ashley to stuff envelopes for eight hours a day, five days a week, envelopes won’t be the only things getting stuffed.

School districts need to lighten up. Let our children with disabilities enjoy their high school years as much as non-disabled students. Don’t start them down a path to stress and then wonder why it costs so much to provide care for them later in life.

Chill, baby….

Not Steve Martin's Jerk

Just when you think things may be settling into the usual crazy routines....something new pops up. That always seems to be the case with Ashley's seizures. We find a medication, or multiple medications, that help for a while - sometimes a long while. Then out the the blue, things change.

For the last week or so, Ashley has been 'jerky'. Usually early in the morning and again at night before bedtime. At first, I didn't know a better way to describe it than the word 'jerky' or strong 'twitches'. She'll be sitting and playing or watching TV, and her upper body will jerk - equally on both sides. I've also seen it start up again during dinner.

These jerks don't seem to bother her, and in fact, sometimes she seems to think they are funny. And to someone not used to the many types of seizures, it can look a little funny. But knowing how Ashley's seizures have changed over her life - different types, shorter or longer, etc. - seizures were the first thing that popped into my mind.

So, after picking the brain of my dear friend, Lynnette, who has also addressed the 'jerks', I believe what Ashley is experiencing is myoclonic seizures.

So, do we need more medicine? Different medicine? Less medicine? I guess the neurologist will answer those questions for me. Has anyone else had experience with these types of seizures? I would love to hear from you...

How Words Feel

Back in early 2007, I wrote about using a technique called Tadoma as one more weapon in Ashley’s communication arsenal. Though almost never taught today, Tadoma was taught widely to deafblind children from the 1930’s to the 1960’s.

As I wrote in my previous entry, Tadoma, as described by Wikipedia, is a method of communication used by people who are deafblind, in which the person places his thumb on the speaker's lips and his fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the pinky finger picking up the vibrations of the speaker's throat. It is sometimes referred to as 'tactile lipreading', as the person who is deafblind feels the movement of the lips, as well as vibrations of the vocal cords,

The theory is that the person who is deafblind will be able to feel the vibrations, the positions of the lips, the air expelled, and other such physical cues, and from that might be able to learn to speak. The Tadoma method was invented by American teacher Sophie Alcorn and developed at the Perkins School for the Blind in Massachusetts. It is named after the first two children to whom it was taught: Winthrop "Tad" Chapman and Oma Simpson.

When I first began my search for more information on the technique, I found little. So, imagine my surprise when I found an article in Psychology Today, dated earlier this month, that spoke of Tadoma.

The article chronicles the path Rick Joy has followed for over 50 years in his mastery of Tadoma. Also, according to the article, Tadoma is rarely taught these days because of new technologies and medical advances for children who are deaf. But the article, and what I experience when Ashley uses Tadoma, describes something more than just a communication system. It takes human interaction to a different and more beautiful level in my opinion.

Ashley has made it very clear that the technologies of today are not her first choice for communication. Sign language and Tadoma are her choices, and I support those choices completely. Both those tools are beautiful expressions of the human spirit as well as a means of communication.