Blech...

Hopefully some new posts coming soon - I am very, very sick.

Chock Full of News

I have run across so many important news pieces this week, and have decided to share them with you!

First, the White House has tapped a new disability liaison, and the buzz is very positive: Claudia Gordon Appointed

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Next, the Americans With Disabilities Act turns 23 this year! Check out this ADA Anniversary Toolkit for a wealth of information and videos!


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This is an oldie but still a goodie - an article about Ending Disability Segregation.


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A new documentary set to premiere on PBS this coming Monday takes a look at life with autism from the perspective of those with the developmental disorder. Be sure to check out "Neurotypical".

Watch Neurotypical - Trailer on PBS. See more from POV.

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I've written about Jenny before, a woman with Down syndrome who seeks power to control her own life. Her case is scheduled to resume on July 29th, and the Washington Post had a very good article last weekend about it. Please be sure to keep Jenny in your thoughts and prayers. This case could have a long reaching impact for the future of people with disabilities.

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And finally, I LOVE LOVE LOVE this article from the BBC! The 10 jargon phrases used for the writer's autistic son hits the bullseye square on. I've heard them all in relation to my children, and I bet you have also.

Special Exposure Wednesday

These two could play tug-of-war for hours, or at least until the toy is shredded (which usually comes first!).  That's Lewis on the left, 10 months old and a lab/border collie mix, and Cooper on the right, 18 months old and a big ole' baby of a lab.

The Last Places I Expected

In this day and age, I am constantly surprised by the doctor's offices and medical facilities that are not equipped to serve people with disabilities.  My children's pediatrician's office is one example.  Although a couple of the doctors (and it is a large group of doctors) specialize in the treatment of children with disabilities, the two large, heavy doors leading into the practice do not have an auto-open feature.  It's a real struggle to get the doors open while pushing a wheelchair.  And, that same medical office keeps telling me they don't need to provide an interpreter for my son who is deaf.

Even when a medical facility is accessible from the outside (ramps, adequate handicapped parking, auto-open doors), I more often than not discover that their waiting rooms and exam rooms are not at all accessible.  From doorways that are too small to so many chairs crowded into a waiting room that it is impossible to find a place to 'park' a wheelchair to exam rooms with high stretchers that can't be lowered, getting medical care for my two children who use wheelchairs is quite challenging.

The following article appeared in the New York Times last May, and it is spot on describing the challenges.

Disability and Discrimination at the Doctor's Office

What about you?  Have you encountered similar difficulties, and if so, have you taken any action to try to change things?  I know that in my area there are not a lot of doctors who accept Medicaid, and as a result, I am often reluctant to complain about anything.  But that's really not excuse - it's time the medical profession realized their obligations and made some changes.

Scentsational??

I love the way Ashley smells, especially right after a shower and having had her hair washed.  She has taught me to use all my senses to the fullest, and smell is one of the strongest.  I'm particular about the laundry soap I use, the shampoo, the body wash, and nothing smells better than my house on a Sunday afternoon after a marathon cooking session.  But the things that stir my senses the most are the way Ashley smells.  Unfortunately, there are times when her scent is overpowered by the scent of others.

I know that a person who is deafblind needs support and that support often means hands-on.  So, at the end of a day when Ashley has been at school and in the community, her scent is overpowered by that of many other people.

There's the bus aide in the morning whose scent is a little like stale bread, and the bus driver, an Indian gentleman who often smells of curry and spice.  I don't know how many people have their hands on Ashley during the school day, but it may be up to 5 people or more.  If each of those people, often women, come to school with perfume or scented lotion, they all seem to mix on Ashley.  Then the home aide comes into the picture - 2 or 3 different people during the week - all of whom have their unique scents.  Sometimes it is stale cigarette smoke, or heavy patchouli-based cologne, or the sausage and peppers preferred by another.

The result is that the scent that is uniquely Ashley is lost, mixed into a dozen different scents that taken all together are not pleasant.  That's why I so look forward to her shower at night so we can reset and bring Ashley back to me.  I truly appreciate the help of so many people, but I do wish it didn't have to assail my sense of smell so drastically all the while altering that which is so Ashley.

Carly's Cafe

This is a must see video and must read posting.  The posting on Babble comes from Monica Bielanko, one of my favorite bloggers.  Take a minute to read her post on Babble, and then have a look at the video below.

Special Exposure Wednesday

During our vacation, we took a ferry from Hatteras Island to Okracoke Island, and were joined by a flock of seagulls.  It was probably the crackers we kept throwing in the air!  Chip took these great pictures, and yes, the birds really were this close to us - almost as if they were posing for their pictures!

Stuck

If you read yesterday's post, you have probably figured out that the recently-hired PCA (personal care attendant) for Ashley has not worked out. I'm working with the agency I use to find someone else, but something that the agency representative said to me left me thinking - thinking about people with disabilities who require daily assistance, and how difficult it is to hire - and fire - personal care attendants. I'd like to know your thoughts on this particular issue...

During our discussion on the reasons Ashley's aide was not working out, the agency representative said, "We've never had any other complaints about her." Given the long list of issues I encountered with this particular aide and with some of the stories the aide shared with me (like how she would sleep at another client's home), at first I was surprised at that comment. But I quickly realized that I shouldn't be surprised. People with disabilities are so dependent on their aides and good aides are often very difficult to find, so to dismiss one, even a bad one, can be a very scary proposition for the person with a disability.

I sure that running through their minds are questions like, "What if I can't find another person to help me?", or "What will I do if it takes a long time to find someone new?". And then, "What is a new person isn't going to be any better?" So people with disabilities feel 'stuck' and as a result, stay 'stuck'. They come to accept that bad help is better than no help. Sub-standard care becomes the norm, and eventually their thoughts of good care, or even adequate care are tossed aside.

So many things in our disability support (and I use that term loosely) system just make my blood boil. This is yet another one of those things. What are your thoughts and experiences? Have you ever felt 'stuck' with bad assistance because you worry about anything else being available? What do you think could be changed to make this situation better?

How To Get Fired If You Are A PCA

• Show up 5 minutes late every day
• Be in such a hurry to leave at the end of the day that you have your purse on your shoulder and you shout 'She had a good day' as you race out the door. You get extra points if you do all that before I get 3 feet inside the door myself
• Stay on your cellphone 85% of the time you are supposed to be working
• Ignore my daughter while you are on the cell phone that 85% of the time you are supposed to be working
• When you are not on your cell phone, balance your checkbook
• When you are not on your cell phone or balancing your checkbook, sit in a chair eating potato chips and drinking soda. Make sure to wipe the grease from your fingers on the arm of the chair.
• Don't learn to communicate with my daughter. Heck, there's no need to communicate when you won't even look at her most of the time.
• Only give her orders as to what you want her to do - "get up", "go to the bathroom", "put your shoes away", and my all time favorite, "turn that toy off, it's driving me crazy."
• Take my daughter into the community but don't tell me when you are leaving, when you will return, and where you are going. Continue to not tell me even after I have explained how that is not to happen ever again.
• Run errands when you are supposed to be working. On the surface, doing that a few times wouldn't be all bad. But, asking my son to watch my daughter so you can get gas, pick up a child car seat, and go outside to smoke are bad. When you are working, you never ever leave my daughter alone.
  
• Act indignant when I mention any of these things and the fact that I saw it all on the camera that is on at all times. You know, that camera that I can check on my cell phone no matter where I am


• Tell me way too much about your life. I really don't need to know about your son's father, your father's surgery, the fact that your car is being repossessed, and that your credit stinks. And while doing all that, make sure to never ask about my daughter - about her likes and dislikes, about how to teach her things, etc.


• And remember those craft supplies you told me you wanted - the ones I spent $100 on - never use any of them with my daughter


• And finally, dress in really revealing clothes, especially thin tank tops that leave almost nothing to the imagination. They look especially good with your daisy dukes.

Giggles

Having a big brother that does things to make you laugh uncontrollably is the absolute best!!

Surf's Up

While surfing the web this week, I have run across some pretty interesting things. I thought I would share them with you.

First up, this is one of the coolest videos I've ever seen. Take a look and stay until the end! You won't be disappointed.

This....this is just sad and awful and anger-inducing....Retard Doll

Museum says no to child's wheelchair. This turned out to be a case of misunderstanding...but regardless, it's just wrong.

Michael Jackson would love this glove that helps the deafblind communicate!

Special Exposure Wednesday

One of the most exciting things we did on vacation was go on a dolphin watching trip on a boat.  It took a while to spot some but we finally did.  Here Ashley is signing 'boat', dirty hands and all! Isn't she just the most precious thing!!!

Just Because

I really have no reason for posting this other than the fact that I loved watching it. Maybe you will also...

Eyes On

Well, I did it.  I've gone back and forth on the idea of installing cameras in my home, cameras that will allow me to see what transpires with Ashley and her aides when I am not at home.  But this weekend I decided to install them.

I consulted with other families who have children with significant disabilities, and almost all of them already had cameras installed.  I decided that for Ashley's safety and my peace of mind that I had to do the same.

Now when I am at work, or anywhere actually since I can view the camera footage on my cell phone, I can check in and see how things are going.  One of the cameras I installed also has a recording capability, a recording which hopefully I will never need to share with anyone.

The video is very good as is the audio.  I haven't decided if I will announce to the aides that the cameras are there, but it is very obvious.  They are not hidden and they look like cameras.

I really wish I didn't have to take this step, but now that I am using an agency for aides (rather than hiring them myself), and because there are multiple aides as well as substitutes should one of the regulars call out sick, I feel it is in Ashley's best interest to ensure her safety and her proper care.

Have any of you installed and used cameras?  Were you happy with your decision?  What, if any, pitfalls did you encounter while using them?

Putt Putt For All

I wrote back in May about the accessible mini-golf establishment that Chip discovered and which we planned to visit on our vacation. Well. we did so last week, and even though I was a little skeptical about its true accessibility, I was proven wrong. It really was completely accessible, and was designed in such a way that unless you were someone looking specifically for the accessibility features, you wouldn't spot them. I believe that could be called inclusion!

So, if you ever visit the Outer Banks of North Carolina, I wholeheartedly suggest you visit Professor Hacker's Lost Treasure Golf! You won't be disappointed!

Special Exposure Wednesday

Vacationing can be really hard work sometimes....

Keeping the Lights Bright

We've been on vacation at the Outer Banks many times.  So this time we decided to visit places that we hadn't seen on any previous trips.  Some of the places were out of the way, places frequented mostly by locals and not tourists, and along the way we found some wonderful seafood to eat.  But we also decided to visit some lighthouses.

I think we've never done this before because I knew we wouldn't be able to climb the lighthouses.  There's really no way to make that accessible for wheelchair users.  But what I didn't realize it that there are usually small museums associated with each lighthouse and they are jammed packed with interesting information about the lighthouse and the area.

Our favorite was the Bodie Lighthouse.  It was recently renovated and just reopened a few months ago.  There was a great little museum and gift shop, and some of the best handicapped restrooms around.  All this is run by the National Park Service, and they are doing a marvelous job.

My Vacation Slide Show - Part 1

Were your parents like mine?  Did they take video and/or a ton of pictures whenever you went on vacation and then invite their friends and neighbors over to view their slide show?  I remember that those friends and neighbors often had a bored expression on their faces, but they were trapped, too polite to get up and leave.

Last week we took a trip to the Outer Banks of North Carolina.  We stayed on the less inhabited Hatteras Island, and had a thoroughly wonderful time soaking up the sun, eating lots of good seafood, visiting some local points of interest, and just unwinding from the normal stress of our lives.  It was wonderful, and this week I will share my 'slide show' with all of you!

The only difference between my parents' show and mine is that I won't get to see any bored expressions!  So sit back, have a cocktail, and enjoy our vacation pics!

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We rented a house on the island, a house that was advertised as handicapped-friendly.  Other than an elevator that worked 50% of the time, I noticed no other handicapped friendly features.  But that didn't matter to Ashley.  You see, we live in a rancher - no steps anywhere.  I bought the house many years ago because I didn't know if Ashley was ever going to walk.  1 week after moving in she started walking.

The rental house had three floors with lots of staircases.  I think Ashley's most favorite part of the whole vacation was being able to climb and climb and climb again.  She did so well that it would be hard for anyone to believe that she is blind!  So here are some pics - not your typical vacation pics, but Ashley's favorite thing nonetheless.