Unstoppable

October is Disability Awareness Month.

October is Down Syndrome Awareness Month.

Did you know that October is also Spina Bifida Awareness Month? It is, and because I have an amazing son who happens to have Spina Bifida, I wanted to share some information with you!

* Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine.

* Spina Bifida remains the most commonly occurring complex birth defect in this country.

* The root cause of Spina Bifida is unknown and the effects for each person are different.

* Spina Bifida is a multitude of problems that affect the mind, the body and the spirit.

* Advancements in treatment and prevention have opened new doors for those with Spina Bifida.

* While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

And as you know if you are a regular reader of this blog, Spina Bifida does not stop Ronnie from being a wheelchair basketball star!!!

To celebrate this month of Spina Bifida Awareness, the Spina Bifida Association hopes to bring to light through pictures the successes of those who live each day with this birth defect. There are a lot of ways in which individuals and families can get involved, and one of those ways is by submitting your vote for the “Celebrate SB,” Facebook photo contest designed to acknowledge the accomplishments of the Spina Bifida community. Voting will be open through October 31st on Facebook. Fans can vote only one time per day during this period on their favorite photo!

Please take a few moments and check out the photos! Then cast your vote for your favorite. In the process, you might just be surprised by the non-limiting nature of Spina Bifida!!

Being the Meany

I don't want to tell my children with disabilities that they can't do something, but I'm finding that I have to sometimes.

Ronnie is scheduled to attend a basketball event at a college about 45 minutes from our home on Thursday night, a school night. He probably will not be home until at least 10am and then has to get up early the next morning.

He also has asked to go to the school homecoming football game Friday night, again not getting home until at least 10pm.

Saturday morning, we are scheduled as a family to drive to the mountains, about an hour away, to pick apples. It will be a long day.

Given his medical issues, I think trying to pack all those things in during the course of 36 to 48 hours will stress his health. He, of course, doesn't agree with me. But as the parent, the final decision rests with me.

I have told him that he can go to the basketball event, and that we will go as a family to the mountains, but he can't go to the football game. I believe he needs Friday night to rest and take care of himself.

As you may imagine, I am not his favorite person at the moment. How have others of you dealt with this? Kids his age (16), disabled or not, feel invincible. But they often do have health needs that require us to step in and make decisions. Any advice???

Special Exposure Wednesday

Bernard, our scary butler, consented to have Chip take one picture - as long as the picture turned out flattering and would get him a date. What do you think? Does Bernard have a chance?

Horror Come True

I wrote last week about my worries for Ashley's future, and here is a story about just such a nightmare come true...

Four Disabled Adults Found Chained in Basement

And here's an update:

IDs and Power of Attorney Paper work found

Room in the Nest

Being the parent of adult children is not always fun. I remember the disappointment in my mother's voice when I had to call her and say I wouldn't be coming for a visit because something else in my life took priority. It really shouldn't have but when you are a young adult and know everything, priorities are often skewed.

I experienced the same disappointment this past weekend.

My 19 year old son, Corey, is leaving for Army basic training very soon. He will be many states away and I don't know how long it will be until we see him again. He's been told that immediately after basic training, he will be going to an 18 week class in yet another far away state.

To both celebrate his future and to spend one last day together as a complete family, I planned a big meal and looked forward to having all my children home for the day. Unfortunately that didn't work out.

Jessica called me in the morning, and I reminded her that we would see her at 10am. She said OK. 10am came and went, as did 11, 12, 1 and 2. Our meal was planned for the late afternoon, and I kept hoping she would show up in time for that.

She didn't.

So my plans for one last family portrait with everyone in it fell apart. Corey asked several times if Jessica was going to show up, and I had to tell him I didn't know. I think he, like me, was disappointed.

I haven't heard from Jessica yet, and I guess I should try not to sound disappointed when we do talk, but it will be hard.

Sometimes the momma bird has to kick the little ones out of the nest, and sometimes the momma bird wishes they would stop back by once in a while.

A Battle With The Dark

Being a parent to a child with significant disabilities is very difficult. But one of the most difficult things early on is wondering whether your child will live or die.

How many nights have you gotten up multiple times just to make sure your child is still breathing? How many times have you sat in a hospital room, clutching your child's hand and praying that they will stay with you at least a little while longer? How many times did you look into their innocent eyes and feel the tears pooling in yours because of fear, fear for their survival?

I've been there, and actually still go there from time to time, as I am sure many of you do. Each seizure, each illness, each pale face and dark circled eyes shakes loose the fear that we try to tuck neatly away in our hearts.

For me, Ashley has survived. She has done what all the doctors said she couldn't do - live. She has definitely had her serious illnesses and her brushes with death, but she has kicked that reality to the curb and is today a pretty healthy and definitely vibrant teenager.

And I find that my fears for her survival have shifted to fears for my survival, and the knowledge that I will one day have to leave her.

Ashley doesn't and probably never will understand the concept of death. If I even leave the house for an hour to go grocery shopping, she is signing and asking for me constantly. And, she will refuse to go to sleep unless I kiss her goodnight. What will she do when I can't give her those kisses anymore?

I know this is a very dark post, but that is where my mind has been recently. Rather than the fear of Ashley leaving me, I fear my leaving her.

There aren't many places a person with deafblindness and medical issues can go as an adult. There aren't many people who even understand her disability. And there are definitely not people who will provide loving care, or even appropriate care, for her.

Though she may not be able to label her feelings, she will feel total abandonment. She will not undestand and she will probably be angry. Those feelings will translate into behaviors that others will not understand and will not support. That lack of undestanding will cause people to make decisions about her that I know deep in my heart will not be good.

Just before I adopted her, her doctors wanted to institutionalize her. If that had happened, she would in no way resemble the person she is today. But does her future without me hold that same threat of institutionalization? If that comes to be, she will lose herself and her life will become my worst nightmare.

I don't have any answers. This post really has no point other than I needed a place to voice my fears lest they totally consume me. Enough for now....

Dizzying

Advances in technology for people with disabilities seems to be happening at a dizzying speed. Every week, I read multiple articles about planned or already-in-use technology. Here's two from this week:

A young man who was left a quadriplegic by a motorcycle accident used his thoughts to control a prosthetic arm to reach out and stroke his girlfriend's hand:

"It wasn't my arm but it was my brain, my thoughts."

And, in a two-month summer course on high-performance computing, promising undergrads compete to create innovative applications. This summer's winner developed a touchscreen Braille writer that stands to revolutionize how the blind negotiate an unseen world by replacing devices costing up to 10 times more.



These are very exciting times for people with disabilities, and I think they will get even more exciting as we move into the future!