Their Lifelines

I try to limit the number of posts I write on political issues. Politics divides people, and I don't want to perpetuate that divisiveness. But, August 2nd is just days away and our politicians can't seem to play nice. As a result, I am scared to death.

There are many things on the chopping block, but the two things of primary interest to me are Social Security and Medicaid. Those two programs are the lifelines for my children. Jessica's SSDI is her only income, and it is already too low to actually live on. Ashley, Jessica and Ronnie rely on Medicaid for their health insurance. They need the medicine that Medicaid pays for to continue to live. They need the surgeries, the interventions, the assistance. None of those things are a nicety or an extra - it is their life. Just one of Ashley's seizure meds costs $450 a week! If she misses one dose, a lifethreatening seizure is a real possibility.

So please, Politicians, get your acts together, but don't do it on the backs of our country's most vulnerable. I'll gladly pay increased taxes if you leave my children's benefits intact.

My Mighty Sprite

It’s so amazing to watch Ashley do things that doctor said she would never do – that others said her disability would prevent her from doing. This past week was a perfect example.

We scheduled a trip to the beach. The particular beach we visited was about a two hour drive from our home. Along the way we planned to stop at a museum, and we had plans during the week for boat trips, playing on the beach, seeing a movie, staying in an hotel, and of course, eating all our meals out in restaurants.

Imagine being deafblind and doing all those things. New smells, new textures, schedules thrown out the window, and a lot of people around that you don’t know. All my training in deafblindness said to go slow, introduce new things carefully and slowly, and try to understand the hesitation the person with deafblindness might exhibit. Well, that was all a bunch of hooey as it pertained to Ashley.

Rather than hesitating, she often led the way. If we stayed too long in the hotel room, she was asking to go – go anywhere – just go. She tried several new kinds of food, including fried pickles (yuck!). She slept very well in a strange bed. She loved all the sightseeing trips, and adored the boat trips. She was extremely happy the whole time, and just adapted to whatever we were doing. It was almost as if she had no disabilities.

I’m not sure what intrinsic quality Ashley possesses that leads her unafraid into new situations, but I wish I could bottle it. She is such a delightful person, and I just know she would love to get in the car and spend the next year exploring the United States! If I could retire, we might just do that.

When people observe her, they often don’t believe she is deafblind. I can assure you that she really is, but her fearlessness and zest for life almost always overpower that disability. She lives life to the fullest, and I am so very proud of her!

Special Exposure Wednesday

My break from the demands of life was wonderful! The kids and I went to the beach and had a great time. One of the places we visited was the Virginia Living Museum. We saw a great collection of Virginia sea life and depictions of the many different environments to be found around Virginia. This little guy, a skate, swam right up to the edge of his tank to greet everyone who passed by!

Gone Fishin'

Well, not really, but I do need a little break. I'm taking a few days off from posting - from thinking - from working - from not napping - from schedules - from living life on a time clock.

It's summer, and summer means a slower pace, right? Mine is anything but that. But for the next few days, it will be slower. I hope Ashley will let me sleep just 15 minutes longer. I may take a bubble bath after she goes to bed at night. I will savor a dinner, not just inhale it. I will listen to the birds, and dead head my flowers. I will scratch mosquito bites and wear flip flops until bedtime. Heck, I might even have a wine cooler or one of my mother's drinks of choice, a Tom Collins. (I have no idea what a Tom Collins is but it sounds like summer, don't you think?).

So enjoy your weekends, everyone. Stay cool and I will see you all again very soon.

How Cool Is This!

NASA has unveiled a new book for blind and visually impaired readers.



The book “Getting a Feel for Lunar Craters” was created with the NLSI and features tactile diagrams of the lunar surface designed to educate the blind and visually impaired about the wonders of Earth’s moon. David Hurd, a space science professor at Edinboro University of Pennsylvania, Edinboro, Pa., is the book’s author. He and tactile engineer John Matelock began creating tactile astronomy tools after a student with a visual impairment signed up for Hurd’s introductory astronomy course. Cassandra Runyon, a professor at College of Charleston, Charleston, S.C. and Hurd previously produced “A Tactile Guide to the Solar System with Digital Talking Book” for NASA.

Although books from the first printing have run out, a second printing is expected in about 2 months. You can bet Ashley's name will be on the second printing list!

Here's the website about the book.

Special Exposure Wednesday

Maybe it was my Southern upbringing but before I ever had a house of my own, I always dreamed of one with both a pyracantha bush and a magnolia tree. I am very blessed to have found just such a home! Here is a picture Chip took of one of our magnolia blossoms:

One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.