Famous

My city has been hosting the National Veterans Wheelchair Games this week, and that has provided many opportunities for Ronnie and his team mates to interact with the veterans.

Kid's Day was held on Wednesday, and Ronnie and the other kids were each paired with a mentor. Check out this page on the Department of Veterans Affairs website where Ronnie's Kid's Day mentor shared his thoughts:

"Man, that kid is incredible!"

Tears for the Future

Writing about today's subject is very difficult for me. Just thinking about this subject can get me tearing up, but it's something I need to figure out. I would like your ideas and comments.

Often parents of children without disabilities make arrangements with friends or family to care for their children in the event of the parent's untimely death. Call it being a Godparent or a guardian, it's usually not difficult to find someone. But imagine the child has disabilities, severe disabilities, and as the parent you have no family members able to step in. And, it's probably not too difficult to also imagine that there are few if any friends willing to step in and provide the intensive care your child with disabilities will need in the event of your death. What do you do?

And on top of that, imagine how difficult it will be for the child, a child who can't understand that their parent, their whole world, just one day disappeared. What would you do?

I've been to meetings about special needs trusts. Money is one thing, but finding someone willing and able to care for your child with disabilities is another thing. And then imagine that your child is growing up, is over the age of 18 or 21. What then? Your child still needs care every bit as much as they did when they were 5 years old, but they are still unable to direct that care themselves.

There are absolutely no easy answers, but at this point, I would take any answer. Yes, I have an adult son, a son who is just beginning to embark on his life. As much as I know he loves his sister, could I ask him to assume her care for the rest of his life? I know I don't want to, but I haven't found another answer yet.

Advice? Ideas? Tissues....???

Special Exposure Wednesday

After the monster storm on Monday, we had a little visitor! We've lived in our house many, many years and never seen a frog. He must have had a wild ride on the wind!

More Than Baseballs Flying

Well we had quite the exciting Monday!

Our local baseball team, the Richmond Flying Squirrels (yes that is really the team's name), was scheduled for their only noon game this season. I decided to take half a day off from work so the boys and I could go. We are all baseball nuts in this family (get it- squirrels, nuts - I crack myself up sometimes).

I met the boys at the stadium, and we settled in for a sunny and hot time. And things stayed that way for 7 innings. Then we saw some angry looking clouds rolling in. They were coming from the west, the part of town where we live. I had received emails about a severe thunderstorm warning for our area, and so we decided to duck out of the game early and head home. That was a pretty good idea.

The storm rolled through and brought with it a tornado. The tornado took out a wall at the stadium, cut power, and blew out windows. Remarkably no one was hurt. But I was very glad that we weren't there and trying to find a secure place to get into with a wheelchair.

The ride home was interesting also. We've survived two major hurricanes in the last few years, and the winds, rain, and hail from this storm looked just like those hurricanes. My two next door neighbors both lost trees, one of which took our a power line. Driving through the neighborhood a little later, we realized just how lucky we were. There were large trees down everywhere, many on houses. We have no power - along with 150,000 other people - but that is a small price to pay.

Hopefully tomorrow won't be quite as exciting....

The view to the west as the storm approaches:



One of my neighbor's downed trees. So very minor compared to other damage in the neighborhood:

Sport

First there was basketball. Then came lacrosse. Now it's softball...

(Do you know why the ball in wheelchair softball is bigger than the normal softball? I didn't. I was told it is because the players can't wear gloves because they need to be able to push their chairs - thus the ball has to be bigger so they can catch it. Interesting!)

Exactly How I Feel, James!

Finally Friday - and I feel good!!!  Hope you do also!

A Slot

It's been ten long years.  Years spent missing supports that could have really made a difference.  Not enough assistive technology - not enough environmental modifications - not enough family training - not enough recreation - not enough personal support.  But all that has now changed.

Ashley has finally been granted a 'slot' on our state's Medicaid Developmental Disabilities waiver.

I shouldn't complain too much though because had she been on the waiting list for the Intellectual Disabilities waiver, we might be looking at even another ten years.

I met today with Ashley's service facilitator for the waiver, and we laid out a menu of services that will serve to benefit Ashley immensely.  From increased attendant hours to assistive technology to high intensity day support to prevocational services and family caregiver training and even environmental (home) modifications that would benefit Ashley as well as the opportunity to obtain even more services in the future.  All these things will go a long way towards preparing Ashley for the future, and will also go a long way to removing a small part of the worry I face each and every day.

I know there may be people who say we take advantage of taxpayer money - that we consume more than we should in the way of services.  Well, I'm a taxpayer also, and in addition to caring for my children, I am more than willing to have my tax dollars support your family member with a disability.  Ashley, and the many other people with disabilities in our communities (and note, I said 'in our communities', because that is exactly where they belong), are a vital part of this thing we call the human race.  They have needs, they have wants, and they have rights - JUST LIKE EVERYONE ELSE.  They have skills, they have talents, and they have relationships filled with love and respect - JUST LIKE EVERYONE ELSE.

Neither Ashley nor I sit home, do nothing, and just reap the financial rewards of public assistance.  I work, and I fully expect her to work when she leaves school.  We volunteer, we give back, and we strive to make the world a better place for everyone. 

At this moment in time, Ashley needs more supports than a person without disabilities.  She has a right to those supports, and she deserves them.  She and I both realize that we are blessed that the supports are available, and neither of us will ever take them for granted.

At this moment in time, a small portion of the weight on my shoulders has lifted.  For that, I am eternally grateful.

Special Exposure Wednesday

Ahhhh, the flavors of my Southern youth - spiced pickled peaches - made with the peaches from my very own tree! (Great picture, Chip!)

What Now?

So it's summer and your child with disabilities is too old for any camps (assuming you could find a camp that would accommodate their needs). What do you do?

As a single mother, I have to work full time. I am the sole provider for my family. I have aides for both Ronnie and Ashley, but the aides are not always comfortable taking them out into the community. And sometimes, to be honest, I'm not comfortable with the aides assuming that responsibility. So my children end up staying around the house all day, and rightfully so, getting very bored.

But even if I didn't have to work and could stay with Ashley and Ronnie all summer, what activities would we find to fill three months of days with no school? And getting a job is not likely since most of the non-disabled teenagers can't even find jobs.

Yes, there are museums and parks, libraries and movie theatres. But after the first month, some of those attractions grow stale. We can't travel all the time - the money for that just isn't there. We will take a week's vacation in August, but August is a long ways off.

So what do other parents do with their almost-adults with disabilities? How do you keep them interested and interesting; how do you help them maintain their skill levels; and most importantly, how do you help them continue to prepare for independence in the future?

The best I've been able to come up with so far is volunteer work. Ronnie is helping out with some office work at Sportable, the adaptive sports organization that runs his basketball and lacrosse teams. He is also learning to wash and maintain a lot of the sports equipment and wheelchairs. I haven't found any volunteer work for Ashley yet though.

If I can't come up with some ideas soon, it's going to be a very long summer, and I fear, a prelude to their lives after they leave school permanently.

Accessible Minds

Accessibility is about more than ramps and grab bars. It's also about attitudes.

On Saturday, the kids and I went to a local farmer's market. I was a little worried because the market was out in the country and actually on a farm. Wheelchairs and dirt down't always play well together, but I really wanted some berries and squash.

We arrived at the Manakin Farmer's Market, and sure enough, parking was in a field, and all the booths were set up under the trees in a patch of dirt. But we were there and I was determined to get some vegetables. We unloaded Ashley's and Ronnie's wheelchairs and started the push.

Ronnie was able to push himself over the dirt bumps and craters, but Chip had to handle Ashley's chair for me. I think she actually liked it - perhaps it reminded her of an amusement park ride.

We made our way around the booths, picking up squash, cucumbers, strawberries, blueberries, rasberries, some strawberry jam and some fresh English muffins. I was happy but soon got even happier.

The three organizers of the market came walking towards us, and began to apologize profusely for the lack of accessibility. They explained that the space was free, which helped keep the cost of the produce low. They said they would like to make it more accessible but didn't know how. The offered to push the wheelchairs for us. They told us that the next time we came we should park right up next to the booths so we didn't have to push so far. There comments were all made very graciously. They were concerned and they truly wanted to help.

I'll take accessibility of minds over physical accessibility any day!

Strolling The Web

Here are a few things that caught my eye this week on my Internet meanderings...

You've probably heard already about the Judge Rotenberg Center and its use of shock therapy on children. In this video, one of the center's lawyers is interviewed by Anderson Cooper:



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Did you realize that Goodwill Industries, one of the leading employers of people with disabilities, doesn't even pay minimum wage? I didn't, and in fact, I had high hopes that Goodwill might be an employer for one of my children in the future. Now I don't know....

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Apple announced it new iOS 6 operating system this week and with it comes some very important accessbility features for students with disabilities and anyone with vision or hearing impairments.

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Misty Cargill, a 30 year old woman with intellectual disabilities, died while waiting for a kidney transplant. Though the hospital said she didn't have the mental capacity to make an informed decisions about a transplant, Tim Shriver, chairman of the Special Olympics, writes "Lurking below the surface is the more likely reason for denial: Someone determines that people with intellectual disabilities are inferior, human beings of lesser value, the last priority." I agree wholeheartedly with his statement and as a parent of children with intellectual disabilities, it scares the hell out of me.

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And finally, get out your tissues. Jess, at Diary of a Mom, wrote this very poignant blog post for all parents of children with disabilities. It is, as is most of her writing, magnificent.

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Have a great weekend, everyone!

Pushing Independence

I LOVE, LOVE, LOVE the new show on the Sundance channel called Push Girls. It's a reality show about four women who are friends and who happen to use wheelchairs. It reminds me a bit of the show Switched at Birth on ABC Family in that the focus of the show is not wholly on disability. Disability happens to be a part of the women's lives, but only a part.

I asked Ronnie to watch Push Girls with me last night because I wanted him to see how independent the women are. Ronnie is used to people doing a lot for him. But if he wants to meet his goal of independent living anytime in the future, he needs to switch his perspective. I believe watching this show might help.

After the show was over, he told me he like it and thanked me for telling him about it. Whoa! Might that signal a bit of progress????

Here is a great review of the show by NPR...

Push Girls - A Fresh Take on Women Riding on 26 Inch Rims

Special Exposure Wednesday

My peach tree has been so full of peaches this year - so full that we have to prop the branches up because of the weight of all the peaches.



I really don't mind sharing the peaches as long as I can get enough to make a couple of peach cobblers. But the squirrels are not as considerate. They don't want to share and seem to be having peaches for breakfast, lunch and dinner...scurvy little yard rats. They leave the peaches half eaten just to rub it in.

Finally Able To Enjoy a Movie

I’ve written several times in the past about captioned movies, or the lack thereof, in our area. Our movie theatre landscape is controlled primarily by Regal Theatres, and not until about a year and a half ago did any of the theatres show a movie captioned for the Deaf. And that particular theatre was not very close to our home.

We’ve missed first run movies that the kids would really liked to have seen had there been captions. We even tried using an iPad to provide the captions, but with little luck for the newest of movies. We even, with the help of our state’s Disability Protection and Advocacy organization, cajoled Regal theatres to show the newest Harry Potter movie captioned the first weekend it opened. But that was the only time they did anything like that. But things do actually seem to be improving.

Some (a few) of the Regal Theatres in our city are showing first run movies and providing captioning through a device that looks like a pair of glasses. According to a website that discusses the partnership between Sony and Regal:

“Sony is working with American theater chain Regal Entertainment to introduce a new kind of glasses technology that can display closed captions for those with hearing problems. The new Access Glasses can show text in six different languages, which is then placed directly in the viewer's field of vision so that they don't have to constantly look at the bottom of the screen. The information is streamed wirelessly, and the location of the text can be adjusted to make things more comfortable. The glasses also include features for the blind or visually impaired, as they can be used alongside headphones to provide extra audio detail about just what's happening on screen.

Regal — the largest theater chain in the US — started rolling the Access Glasses out this month, and expects to have them available in "practically all of its fully digitized theater locations" by early 2013.”

Chip and Ronnie went to see the movie Prometheus this past weekend and used the glasses. They worked very well, but currently don’t work with 3D movies. This is definitely a huge step forward for Regal, and a very welcome technology that will allow my family and many others to enjoy movies every bit as much as the Hearing community!

What A Coincidence!

It seems like the older one gets, the more interesting coincidences occur. For example, when I showed up for my 20th high school reunion, I noticed a person that I had been working with for about 4 years. Our high school was in a city two hours away from where we both lived and worked. I had no idea that we had even gone to the same high school, much less graduated the same year. We both had quite a laugh over that!

One of the more interesting coincidences of recent note is that the doggie daycare the Cooper now goes to used to be the regular daycare that my children attended! Here is their picture on the first day of one of their elementary school years:



And here is Cooper having a blast at that same facility (granted, there have been some major changes). Cooper is the one hogging the pool!





So what interesting coincidences have you experienced?

Saying It Out Loud

I'm going to say something out loud here that I've been whispering in my mind for a while now.

I whispered because I was afraid people would judge me, call me crazy, shake their heads and never visit my blog again. I'm pretty sure that's what the people in my non-blog land will do. But if there is anything I have learned in my many years on this earth, it's that I can't let other people's opinions mold my decisions. That's easier said than done sometimes, but with time I am finding it easier to travel my own path.

I want to adopt another child.

Don't bother calling the men in white coats. Trust me, this has been a decision long in the making, and one which I have thought and prayed about for a very long time. I know some, if not most, will call me crazy, but my heart says otherwise, and right now I am listening to my heart.

I don't have a specific child in mind. I haven't really even started looking hard, but I feel led in this direction, a leading that was similar to what I felt with all my other children.

I want a child with medical issues. Caring for such a child is where my strengths lie. I would especially like to find a child that lives in an institution, a child that needs to know the true meaning of family and home, not staff and facilities. That type of child is not easy to find. When a social worker places a child in a facility, they usually do so because they feel there is no other option, and that the only way the child will survive is to be in such a setting. I just want the chance to tell them Ashley's story, and then hopefully they will change their minds.

Ashley was destined for an institution. I was the only person who expressed interest in adopting her, and even then, I had to work very hard to convince her social worker that Ashley would be better off in a family instead of a facility. And I was correct. Ashley has flourished, not just survived, in our family. Without going into details which will make me cry, Ashley would be a very, very different person had she been placed in an institution as a baby.

So there - I've said it for all the blogging world to hear. Who knows what the future holds, but I hope it means another child will join my family.

Special Exposure Wednesday

Chip has always had the dream of visiting every major league baseball park. On Sunday, he and Ronnie clicked off #2 when they drove to D.C. to see the Washington Nationals play the Atlanta Braves:

Set The Glass Down

So many of the blogs I have read recently have been on the subject of stress, extreme stress. Maybe it's because I read a lot of blogs from parents of children with severe disabilities - maybe it's because we are deep in the heart of IEP season - or maybe it is because with Summer approaching, so many of us are wondering how to keep our children's skills on track until the start of the next school year. But, I'm right there with all of them.

My stress is indeed related to the severity of my children's disabilities. And, Ronnie's current school year started off poorly and has gone downhill ever since. But adding tremendously to my stress is my job. My childrens' health is holding steady for now and all their IEPs are done for this year, so things should be leveling out. But the stress at my job just seems to be increasing.

I've got to find a way to regulate the stress and keep my sanity and health from plummeting. And today I received an email that just may help me do that.

The email was from a friend who understands stress. He related a story from a meeting he had recently attended. The speaker at his meeting stood in front of the class holding a half full glass of water. She turned to the class and said, "I bet you are all thinking that I am going to ask you whether you see the glass as half full or half empty, but I'm not. I'm going to tell you how I view this glass and what it has taught me."

The speaker proceeded to hold the glass out at arm's length. She said, "Think of this glass of water as the stress in your life. Holding it out for just a couple of minutes is no problem. But the longer I hold it, the heavier it seems to get. The actual weight doesn't change, but my ability to hold it does. Finally, I won't be able to hold it out any longer, and it will go crashing to the floor."

"This glass of water is the stress in my life", she said. "The longer I allow the stress to hold on, the less likely I will be able to hold up to it. I must, if I am going to be able to hold the glass out, occasionally put it down. The same is true for the stress in my life and your lives. To be able to continue to function, you must occasionally put your stress aside. Whether that means taking a vacation, not doing your household chores for a week, going out to dinner and a movie with a good friend, or just putting your kids to bed an hour earlier, you must occasionally set your glasses down."

This analogy really works for me. Regardless of the amount of stress in my life, regardless of whether or not I feel parts of my life will not go on without my participation, I am going to start putting my glass down more. I will visualize the image of holding a half full glass out at arm's length, and I will choose to do something that helps me lighten that load.

What about you?

Calling Out Cho

Almost 2 years ago, I wrote about comments that Jennifer Aniston made on the Regis and Kelly show. The comments included the R-word. Well it has happened again. Comedian Margaret Cho made similar comments on a Bravo show.

One of my favorite bloggers, Phoebe from the Herding Cats blog, did an excellent job of calling Ms. Cho out for her comments. You can read her blog entry here.

There is one difference though between Ms. Aniston's comments and Ms. Cho's comments. Margaret Cho issued what seems to be a heartfelt apology. You can view that apology at the end of the Herding Cats blog post.

Thank you, Phoebe, for your immediate response to Margaret Cho, and thank you, Ms. Cho, for your sincere apology. This is exactly the way to get a discussion started, and to educate people as to how offensive and hurtful their words can be.

She Glows

I've complained a lot in the past about the way people stare at my children. I'm not going to promise I will never complain again, but I will promise that before I start, I will remember the lovely young mother in this video. She's half my age and wiser by a mile. Check out the way she glows whenever she looks at her son...

A Young Mother's Story