Are You Ready?

We've had quite the week, but it was no where near as difficult as others in our state had.

It started last Monday with something called a derecho. I had to look it up, but apparently it means a really bad storm with exceptionally bad winds - pretty much a tornado's first cousin. That storm traveled in a straight path down the highway that is behind our house. We experienced downed trees and power outages, but our power company was pretty fast to respond. Amazingly our power was only out for about 8 hours, but for others it was a couple of days.

Then just as things were starting to get back to a normal, sweltering summer, two more storms hit. Again they were called derechos, but this time they brought their cousin, the tornado. By Sunday morning, our power company had said this was the worst non-hurricane event our state had ever seen with 1 million people without power. Our governor declared a state of emergency, and the heat began to soar over 100 degrees.

God's hand must have been covering my house because through it all we never lost power. The worst event for my state short of a hurricane - 1 million without power - and we who lose power if a squirrel sneezes - were fine. The weather guys called it a derecho again, but I called it a miracle.

What all this highlighted for me was the importance of a family disaster plan. I've addressed this several times in the past, usually right after a disaster hits. And here I go again, but this time I am determined to get our plan worked out BEFORE the next disaster.

How about you and your family? What are your plans in the event a disaster - wildfires, hurricanes, tornados, floods, derechos - hits and you must leave your home? Below are some links and a video I found to help me refine my plan. Maybe you will find them useful also.

Red Cross, Disaster Preparedness for People with Disabilities

FEMA, Planning and Preparedness for People with Special Needs

Disability.Gov - Emergency Preparedness

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!

Listen To The Real Experts

Catherine's cousin said, "People who are the experts on disability are not the doctors. It's the people with disabilities." Well said, Catherine... My state legislators need to view this video...

My Crappy Life

This is my last post of the week talking about things that have made my life as a special needs parent a little easier.

My life is full of crap...but that is not a bad thing. It means every child's digestive system is doing what it is supposed to do. Believe me, having a non-crappy life is much, much worse than a crappy one.

It seems I am constantly mixing Miralax, buying glycerine for 'bowel management', searching for the plunger, cleaning the bathroom, making sure the bidet toilet seat is functioning, shopping for the best price for incontinence products, and going through wipes and toilet tissue at an alarming rate. But again, this isn't a bad thing.

What is a bad thing is expensive, small baby wipes. I go through a lot of them, but I always wondered if there was a better solution. And there is!

I found this product called Certainty Adult Washcloths. They are just like baby wipes but bigger, softer and stronger. And the price is comparable. I can always find them at Walgreens, and they are almost always on sale.

I use them for my crappy life. I use them to wipe sticky faces and hands. I even use them to get spills out of clothes and carpet. I always have a pack with my in each child's backpack, as well as strategically placed around the house.

So, if you have a child that is not a baby but who still can benefit from wipes, I wholeheartedly recommend this product. And just for the record, Walgreens did not ask me to review their product, and provided no product or compensation to me. But I am more than willing to let them help out with my crappy life anytime they would like!

Dutch Door

Ashley is a child that likes to explore. She is also very strong willed. If she doesn't want to do something, I am hard pressed to convince her otherwise. And staying in bed and in her room at night is just one example.

Left to her own devices, she would get up in the middle of the night, go help herself to something from the fridge, and then proceed to the family room to engage in some noisy pursuits. Since she is blind and deaf, I worry about her safety during those times.

When she was much younger, she had an enclosed bed. But once she learned to climb over the top and slide to the floor, I moved to using a baby gate at her bedroom door. That lasted maybe a year or two, and then she figured out how to unlock and escape. My latest attempt at keeping her safe in the middle of the night is a Dutch door.

Two years ago, I had a Dutch door installed in place of her regular bedroom door. When it is her bedtime, I keep the top part of the door open and close the bottom part. Doing it like that means I can still hear her if she needs me, but it also helps to keep her from wandering. I did have the lock placed on the outside of the door thinking she wouldn't figure that out and be able to unlock it herself. It took her all of 45 minutes to figure that out. So now, I have a slide lock placed at the bottom of the outside of the door. That solution has worked for two years now, but I never know when the little smarty pants will figure out how to open that.

But for now, I can sleep easily knowing she is safe in her room in the middle of the night!

I have heard that any door can be adapted to be a Dutch door, but because Ashley is such a strong little cookie, I opted for a solid wooden door. It wasn't cheap, but for two+ years of restful sleep, it was well worth the money!

Just another of those innovations we parents of children with special needs have to devise!!

Swash!

This week I am going to write about some of the things that have made my life as a mom to children with special needs a little easier. These will be the more obscure things - not wheelchairs, standers, hoyer lifts, etc - but things we might not think of right off the bat. And, if you have any products to share that have helped you and your children, please feel free to share!

In 2008 I wrote about one of my favorite things - my CleanButt Bidet toilet seat!

It was one of the features of my bathroom remodel, a remodel to make things easier for Ashley. And it worked so well that I have no idea how we existed prior to having it. But alas, four years later, the CleanButt was showing its age and I needed to replace it.

I searched far and wide on the Internet only to discover that the CleanButt company was no more...Even though I initially panicked, I did find that there are some other companies that make a similar product.

The product I chose was the Brondell Swash, and it is every bit as good as the CleanButt, and maybe even better. (Brondell has not asked me to review their product nor provided their product to me. I paid for it with my own hard earned money.)



The Brondell is sturdier, it looks nicer, and it was cheaper. There are more expensive models, but I opted for the one without the blow dryer. The one I got does have heated water, and cusomizable positions and water strength. The directions that came with it for installing it were simple to understand and very complete. Because we already had the electrical outlet behind the toilet, Chip was easily able to get it installed in about 30 minutes. (Brondell does make a model that doesn't require the electrical outlet, but the water isn't heated.)

I wholeheartedly recommend this product for anyone caring for a person with a disability - young or old. It has made life so much easier for me, and so much more respectful for my two kids with disabilities.

Not Enough Seating

Here is a question for those of you who have a wheelchair user in your family. When you go to performances or plays or sports games, how is the handicapped seating handled?

My general impression from the venues we have visited is that a wheelchair user is allowed one companion seat. If our party includes more than just those two people, we have to get seats in some other section. For example, the last time we went to the circus at our city's coliseum, I got two handicapped seats for Ronnie and Ashley, two companion seats for me and Chip, and Corey had to go to another section.

I just really don't think groups of people should have to be separated like that just by virtue of some of the group being wheelchair users.

It's not like the handicapped seats are prime seats. From my family's visit to several different venues, the handicapped seating areas are about in the middle of all the seats. By using those seats, we are not taking special seats away from someone else, and usually we end up paying extra for the handicapped seating.

And just last week, I heard from a mom who was told that no one could sit with her child who was assigned a handicapped seat. No arrangements had been made for companion seating. This child was so excited to see the Lion King show from Broadway, but unfortunately couldn't stay due to the seating issues.

How have you handled this on your outings? Have you found that complaining to management makes a difference? Do you try to work things out in advance of the event, and still have problems when you arrive? If you have found a way around this type of rule, I would love to hear about it!

Light My Fire

OK, I'm about to step back on my soapbox again. Let's talk a bit about the sexist attitudes of some restaurant owners and in addition, the complete disregard for wheelchair users at those same restaurants.

My younger kids were back in school today, but I had another day before having to go back to work. Chip is still on college break, so he and I decided to try a new restaurant near where we live. The name of the restaurant is Halligan's, and the one near us is actually the second one of these restaurants. The first Halligan's opened in our city's downtown area back in 2008, but the one we visited opened just a month ago.

The Halligan's website states that they, "capture the essence and mystique of what it truly means to be in the fire service. The restaurant is a virtual museum and tribute to past and present firefighters of all jurisdictions. We have accomplished this by creating an atmosphere that is comfortable to all members of the fire service as well as an awe inspiring ambience for the general public."

Further, the website introduces the owner as a current county firefighter, someone with 20 years of service who decided in 2008 to open his first restaurant. Sounds like a good plan if you believe the rumors often heard of firefighters being great cooks. And the food we had at lunch today was really good, some of the best I have had recently. I just wish two other very important aspects of the restaurant were not so bad.

First, what do I mean about sexist? Well, if I were a female firefighter I believe I would have a problem with the female serving staff dressing in barely-cover-the-butt khaki skirts. Everyone working in the restaurant dresses in an interpretation of firefighter uniforms. Everyone that is not female wears khaki pants, blue teeshirts, and red suspenders. But if you are female, you wear the microskirt, a tight teeshirt and the red suspenders. Yes, it's a bar, but still, the owner doesn't have his male servers in tight pants and even tighter teeshirts. Again, if I were a female firefighter, I don't think I would choose to support the restaurant.

Secondly, there was a complete disregard for the accommodation of wheelchair users. Every, and I mean EVERY table in the place was a high bar-style table. Absolutely impossible for a wheelchair user to sit at and eat or drink. I asked the server about the tables, and she said that the owner "didn't think about that until some patrons showed up in wheelchairs."

Really...you've been a firefighter for 20 years...a firefighter that more than likely had to help people with disabilities over the years, and you didn't think about that when opening your restaurant??? Or just discount the fact that you are a firefighter. How can anyone open any sort of establishment these days and not think about people with disabilities? It boggles the mind.

And one more question - did the building inspector not notice the lack of accessibility, or is it not their job to notice such things?

So Halligan's, dress your servers appropriately and remember that not everyone can lift themselves into a three foot high stool. You know, looking at your picture, Mr. Owner, and seeing you in the restaurant today, you might yourself be looking at disability in the near future. What then? Will you finally provide a welcoming establishment for all people?

"I Don't Want Pity"

We parents of children with disabilities spend a lot of time talking and writing about the lack of accessibility and accommodations for our children. I know that at times I have gotten down right angry when, for example, non-disabled movie-goers use the handicapped seating at the theater or when I can't find a close parking spot. But compared to some people in Africa, what we experience seems like nothing more than a mild annoyance.



The subject of disability in Africa is not often discussed in the media, but a new documentary film aims to address this.

The film, Body and Soul, was shot in Mozambique's capital Maputo and follows the day-to-day lives of three young disabled people.

It reveals the challenges and discrimination they face - some children in Mozambique are not sent to school for example - but also reveals the strength and determination of each of the film's main characters.

Check out this link for the movie trailer, but be sure to have some tissues handy. Trust me, you will need them.

Visualize This

Sometimes I like to visualize in my mind what it must be like to be in a wheelchair like Ronnie or Ashley. Doing so helps me figure out accommodations that can be made to help make their travels a little easier. Today I was attending a business-related conference at a local hotel and decided this would be a good time for a visualization.

Unfortunately, the first leg of my visualization trip was not so good. I had to park in the parking garage for the hotel. I tried to pull into a handicapped parking spot, but the access aisle was being used for storage. See the picture below.



This is not an usual sight though. In the past I've seen piles of dirt, piles of snow, snow moving equipment, and grocery carts piled into the handicapped parking spot and access aisle. The way these concrete things were positioned, it was impossible to open the car door. I pulled out and found another parking spot. A person with a wheelchair may not have been able to do that.

Then my visualization took me up the elevator to the hotel lobby so I could register for the meeting. All that went well. The registration counter was lowered and had I been in a chair, I would have had no problem signing in and picking up my materials.

The next problem came when I tried to move through the hallways of the conference area. There were vendors lining each side of the wide hallway, making it not so wide. Throw in approximately 800 people, and traveling in a chair would have been nearly impossible.

There would have been excuse me after excuse me, tap-tap-tap after tap-tap-tap trying to get people's attention so I could move past. I think I would have just given up at that point, and now I understand better why Ashley and Ronnie can both get so frustrated in crowds.

Finally I found the room I was supposed to be in. It was a large banquet hall filled to capacity with round tables, each seating 8 people. There was hardly room to walk between the tables, much less move in a wheelchair. Had I really been in a chair, I would have had to just wait by the door for the entire presentation.

After the keynote, we were to move to breakout rooms for the next session. Mine was in a room with two aisles of chairs, each having 10 chairs in each row. Again, there was no room to move a chair down the aisles. I would have to park my chair either in the front of the room or the very back of the room. Either would have marked me as 'different' to the crowd.

After that session, it was back to the banquet hall for lunch. I thought I had it figured out this time. I would go in early in my chair, before the room filled with people, and that way I could get to the far side of the room to sit with my co-workers. But I forgot something very important. Had I done that, I would have been trapped in the room until everyone else left at the end of lunch. A trip to the restroom would have been out of the question.

And so the day continued - too many people, not enough room, and doors to heavy to handle while trying to also move a chair. I found myself getting very frustrated and wanting to just yell at someone. Again, I now understand Ashley's and Ronnie's behavior a little better.

But there was one thing that really, really surprised me. How could there be almost 1000 people in one location and not one of them have a physcial disability? Does that seem a little odd to you?

What Do You Think?

Ronnie has a wheelchair basketball tournament coming up in a few weeks. It will be held at one of our local universities, and is sponsored by Sportable, an organization in our area that is committed to providing adaptive sports opportunities for people from age five to age 90.



Ronnie is the only Deaf player on the team. We've spent the last week or so trying to figure out how he will know if the referee blows his whistle, and how the coach can convey play strategy to Ronnie.

I think we have figured out the whistle thing with the help of the women's basketball coach from Gallaudet University. When Ronnie's teammates hear the whistle, they will put their arms in the air thus alerting Ronnie.

But the coaching instructions are a bit more difficult. We have experimented with the coach having a blue tooth headset and communicating via an IPhone dictation app to Ronnie. But, doing it that way is a little cumbersome. The ideal solution would be to have an interpreter.

But interpreters are really expensive.

In the past, we had a volunteer and that worked really well. Unfortunately our volunteer moved away, and I haven't had much luck finding another volunteer. So one of the options we had been exploring was to ask the university where the tournament is being held to provide interpreters for the day.

They declined, saying they felt it was Sportable's responsiblity to provide the interpreters.

Two conflicting opinions have been voiced. One, the interpreting company feels that the university is just as responsible for interpreters as they are for accessible bathrooms, wheelchair ramps, and such. In a very impassioned email on the subject, the head of the interpreting company wrote:

Does this mean that if your child was in a wheelchair they’d put a lock on the handicap-accessible bathroom door? Put gates in front of ramps? Would you have to find a volunteer to carry your child (and wheelchair) into the building? Put a diaper on him (since he wouldn’t be able to get into the bathroom)?

The other opinion says it is indeed Sportable's responsiblity to provide interpreters since they are the ones running the tournament. Unfortunately, Sportable, being a non-profit that has a shoestring budget, cannot afford to do that.

So I am just wondering - whose opinion do you think is correct?

A More Accessible America

My boys and I like to go to baseball games. We've been to Baltimore for the last two years for an Orioles game, and we have season tickets to the Richmond Squirrels baseball team. But, finding accessible seating seems to always be an issue. I wrote a blog last year about the Richmond ball park.

But all that should now change with the revised and expanded Americans With Disabilities Act. The regulations apply to the activities of more than 80,000 units of state and local government and more than 7 million places of public accommodation, including stores, restaurants, shopping malls, libraries, museums, sporting arenas, movie theaters, doctors’ and dentists’ offices, hotels, jails and prisons, polling places, and emergency preparedness shelters.

The 2010 standards also include, for the first time, standards on making swimming pools, parks, golf courses, boating facilities, exercise clubs, and other recreation facilities accessible for individuals with disabilities. Entities covered by the ADA have until March 15, 2012 to comply with the revised standards.

I suggest you visit the Department of Justice's ADA website for more details.

(Although this is a move in the right direction, I am really worried about where things are going with the Federal budget. I fear the next areas to receive cries for cuts will be the entitlement programs like Medicaid. Having accessible seating at the baseball park means little if my children can't receive the medical care they desperately need.)

Lawsuits Abound

Denise Payne, a Florida resident who has cerebral palsy, and her business partner, Robert Forlano, formed a 5013C charitable organization called the National Alliance for Accessibility. As in Virginia, all charitable organizations are required to register with the Florida Department of Agriculture and Consumer Services. Ms. Payne’s organization, however, is not registered as required by law.

Ms. Payne and her organization filed six lawsuits in the Roanoke, Virginia federal court alleging many area establishments are not accessible. Included in the list of establishments are several shopping malls, two hotels and Radford University. The six cases target Virginia, but Ms. Payne has recently filed over 200 similar cases, all alleging a lack of accessibility.

While I am in full support of pursuing issues through legal means IF ALL OTHER ATTEMPTS TO RESOLVE ISSUES FAIL, I do not support this shotgun approach to demand change. I have to wonder what the real motivation is in all these cases.

As you know, I recently started a new website titled www.ustooplease.com. I purposely added the word ‘please’ to that web address. And as I mention on that website, I truly want to raise awareness about accessibility and inclusion. I share all my observations on that website with the businesses I review. I offer a list of resources to help those businesses become more accessible and inclusive.

I believe communities will begin to welcome everyone when everyone works together to realize true inclusion.

Like a dog that is beaten every time it urinates in its owner’s house, it will eventually become housebroken. But the dog will never truly be a part of that owner’s family – it will remain an animal that is continually beaten to achieve the owner’s goals.

I don’t want businesses to make changes for accessibility and inclusion because they are beaten into doing so. I want their decisions to be based on the realization that an inclusive community is a true community.

My website is www.ustooplease.com. Ms. Payne’s should be www.ustoooriwillsueyou.com.

(I searched and searched for Ms. Payne's and her organization's website but could find nothing. Nor could I find a telephone number after almost an hour of searching the web.)

It's a Launch!

Many years ago, I would go shopping or out to a restaurant without a thought about accessibility. I would walk up curbs without thinking about people in wheelchairs. I would get annoyed with store aisles that were so packed with merchandise that I couldn’t find what I wanted. But, it would never occur to me that some people wouldn’t even be able to move around that same store. And like a lot of other people, I would stare at a blind person using a cane, but I wouldn’t ask if I could assist or direct them to the checkout register.

All that changed when I adopted four children, two of whom are in wheelchairs, one who is blind, and one who doesn’t handle too much sensory input very well. Although those adoptions began 14 years ago, I’ve not seen much progress related to accessibility in my community or other communities my family visits.

So I decided to create a website as a way to raise awareness about accessibility and inclusion. My new site is called US TOO PLEASE.



As my children and I travel through our community, I will review the places we visit. I will write about how physically accessible they are – how welcoming they are to people with disabilities – how inclusive a product or service they offer – and whether or not they make reasonable accommodations for people with disabilities.

I do not mean US TOO PLEASE to be an exercise in bashing. I will share the good as well as the not so good, but I will always let each establishment know the results of my review. I will offer to publish any comments they may have, and I will inform them of resources that are available for improving their accessibility and inclusive practices.

My sincere hope is that this endeavor will help to improve my community, as well as all communities, for people with disabilities. I want to leave a legacy of inclusion for my children. I want to make a positive difference in the lives of all people, especially those with disabilities.

Please visit my new site and let me know what you think! And if you have any specific places you would like me to review, just send me an email.

p.s. Having a new website does NOT mean I will devote any less time to this blog - my baby that has allowed me to find my voice, to make special friendships, and to keep me sane! I will still be writing here every Monday through Friday as always!

What Do You Think?

Over the years I have been blogging, I've done many posts about accessibility and accommodations. My recent post about Joey's Hot Dogs was one of those. My idea is to expand those posts and reviews, perhaps even into their own blog.

With aging baby boomers and more premature babies surviving, disability is becoming an even more recognizable state of life. I don't know about the specific areas in which you live, but in my area, I don't feel disability and needed access and accommodations are given much attention. The intent of my new blog would be to bring some attention to those things.

I will plan on one post a week about a place - store, restaurant, museum, school, park, etc - that my family and I visit. Then I will give you my opinion of both the accessbility and reasonable accommodations of each place. The places might be local businesses in my area, state parks, other locations to which we may travel, or chain establishments like Target, WalMart, McDonalds, etc. And I will also plan on sharing my review with someone at the location we visit.

So, what do you think? Is this worth doing? Would such information be valuable to you and your family?

Love Joey's!

Our plans for a Christmas break spent in the Outer Banks of North Carolina didn't work out, but we did have a wonderful time exploring our home city. We went to the zoo, played games at Dave and Busters, made glass creations at a place called All Fired Up, and ate at an awesome hot dog joint.

Joey's Hot Dogs used to exist in the corner of an Exxon gas station about a mile from our house. I had heard about how good they were, but eating at a gas station just held no appeal for me. But a few months ago, Joey graduated to a real section of a strip shopping center, and we had been wanting to try it.

We actually went on New Years Day. There were no crowds when we arrived, but people did start flowing in before we left. The hot dogs were every bit as good as I had been told, but the experience was even better.

Joey's is a small place crammed with tables and chairs. Chip told me before we went in that we would have a tough time moving two wheelchairs about. It was almost as if he was warning me so I wouldn't get upset once we did go in (what? who me?)

But I was very pleasantly surprised. The owner (Joey?) and his helper were wonderful. They helped us moved some tables, asked what we wanted (instead of having us go to counter like everyone else), brought our drinks to us, and the absolute most important thing? They didn't stare!!

The whole experience was a perfect example of accommodations being made, not singling out my family, or acting exasperated that we required some changes. I felt like we were a normal family, out for a normal lunch, and that we were welcomed by the establishment. Go figure.

So Joey, we loved your hot dogs and your apple pie a la mode, but we love you and your business even more. We will be back!!

Suggestions

Yesterday was the last day of ESY (extended school year) services for Ashley. For the last seven weeks, she has gone to school Monday through Thursday from 8am until noon, all in an attempt to keep her skills from regressing. The actual classroom services were largely a waste of time, but that is not what this blog post is about. This post is about school bus services.

Yes, I know, I have written many times in the past about the issues surrounding bus transportation in my school district. Well this post is not going to dwell totally on the negative. Bus services were, for the most part, excellent this summer. They did however start to fall apart this last week of school. And, I have a few suggestions so that doesn’t happen in the future.

The important and very positive thing about bus services this summer was that Ashley had the same bus, the same bus driver, and the same bus aide for six out of the seven weeks. That meant she could build a relationship with them, and she knew what to expect each day. She saw the same children on the bus each day, and the arrival and return times were very consistent. The driver and the aide took the time to talk to me and to get to know Ashley, and most mornings, that meant she skipped happily off to board the bus.

During this last week of school, the regular driver and aide were scheduled to attend training. That meant new staff – people who knew nothing about Ashley, people who were changing things up. And, as most parents of children with disabilities know, changing things up can be a minefield – and it was for Ashley.

So, rather than going on and on with my complaints, today I have decided to offer some suggestions!

First, I acknowledge that my school district really does want to provide acceptable transportation services. I also acknowledge that bus staff have lives too and must sometimes be out sick, out for training and other such stuff. What I would like my school district to acknowledge is that changes, even minor ones, can be very disruptive for many students with disabilities.

For example, some students like to sit in exactly the same bus seat each day. Making that student sit in a different seat could set a day of distress into motion.

Some students like to sit alone and some like to sit with a friend, often a particular friend. Deny either that accommodation, and you may get cursed, hit, bitten, etc.

Some students like music on the bus – some don’t, but all usually want things to stay the same – music or not. Play music when it hasn’t been played before, or all of a sudden stop playing the music – or God forbid, change the station, and you could have several meltdowns.

Each student on the bus has special needs, and some of those needs involve seizures or other such medical conditions. New bus staff needs to know that, or a seizure may be viewed as negative behavior. Some students may be deaf, and if the bus staff keeps talking to them and gets no response, patience will be tested. Some students may have a comfort item that goes everywhere with them. If there is no safety reason for denying that comfort item on the bus, the staff needs to know not to touch it.

These are just a few examples, things which I think could be resolved purely with communication. How hard would it be to have a diagram of the bus seats posted on each bus? Use an erasable marker to show which seat each student prefers to sit in.

Have a one page/one paragraph summary of each student’s likes and dislikes. I’m sure most parents would be happy to provide this. Keep that information in the bus, and require substitutes to read it before leaving the bus garage.

Just a few short minutes in the morning and afternoon for a substitute driver or aide to review information could make for happier students, happier parents, and an easier job for bus staff and teachers.

Do you have any other suggestions for improving school transportation and keeping everyone informed?

No Dragon Training For Us

My boys asked me to take them to a movie this weekend. The movie they suggested was How To Train Your Dragon, and I was just pleased that it wasn't a violent or otherwise objectionable movie.

Imagine my surprise when I found out that NONE of the movie theatres in my city have closed captioning or any other type of accommodation for people who are deaf. Really - we called every single one. It wasn't that they just didn't have it for the movie we wanted to see - every one of them said their theaters have no such technology.

I don't live in a small town. I live in the capitol of my state - a medium sized city with lots of movie theaters. I know there are a lot of deaf people that live in this city because we go to silent lunches and dinners with them. I've never asked those people about movies because I naively assumed there would be accommodations, but you can bet I will ask at the next lunch or dinner we attend.

Really, is this legal? Can anyone enlighten me?

Growing Pains

With one major exception, hospital visits have always been positive experiences for Ashley.

When I first brought her home, the hospital we visited most often was our local Children’s Hospital. Everything about that hospital was geared towards children and their families. Doctors and nurses were specially trained and their hearts were called to tend to the needs of sick children. The facility was set up to put scared children at ease, and to make families a fully participating part in their child’s healthcare experience.

When that local Children’s Hospital became more of a rehab facility than an acute care facility, we were forced to seek care at one of our regular hospitals – hospitals which treat children and adults, hospitals which cater to pregnant women, people with cancer, people needing surgery and people with mental health issues. And still our experience was good since the hospital had a special department to handle the needs of children, even children with disabilities.

But now, as my children are becoming young adults, I’m finding that the special attention paid to making my children with disabilities comfortable during hospital visits is diminishing.

As young adults, my children with special needs are now just patients – patients just like those without special needs.

Have others of you found this to be true? If so, how have you addressed this with your medical support staff? I don’t think my children with special needs always need special attention, but I do believe they need the appropriate accommodations. And I’m not always finding that…

Black and Blue

Ashley bruises easily due to one of her seizure meds. But, when she comes home from school with large, very black and blue bruises, I do have to wonder what happened.

I’m quite familiar with the types of bruises that are accidents on Ashley’s part – running into things, for example. Those things are expected due to her blindness. But, the perfect shape of fingertip bruises on her upper arm, or the large bruise on her wrist are more than likely not due to accidents.

One of Ashley’s teacher and I have been discussing this for a while now. I'm very lucky this year that this particular teacher is a very caring and concerned person, a parent herself of a child with a disability. So, when she sees a bruise, a scratch, anything out of the ordinary, she calls me. We both feel that the bruises we are seeing are happening on the school bus.

And that must be why I received a phone call today from Central Office Transportation. I believe Ashley’s teacher contacted them. The bus staff doesn’t sign – they probably don’t recognize when Ashley is having a seizure –and they don’t appear to understand that transitions are difficult for a child with special needs. As a result, there is a lot of pulling and tugging to get Ashley off the bus.

The transportation person was very professional and very concerned. In fact, many years ago, she used to be Ashley’s bus driver, and still has a fondness for my lovely daughter. She asked me – really asked me – what I felt was happening. She told me she would be pulling the video tapes from the bus to see if she could spot anything. She told me that if training was needed for the bus staff, she would make it happen.

That conversation was one of the most positive I have ever had with a school district employee.

So, even though I don’t have any answers yet about the source of the bruises, I believe I will have answers very soon. Kudos to both Ashley’s teacher and the transportation person. You are both the type of people who make me want to send Ashley to school each day.

Today I am thankful for the upcoming three day weekend. I'm hoping the rain will pass quickly tomorrow morning so we can go apple picking.