THAT GIRL

Just 5 more days.

Ronnie has been counting down to the start of school. He wanted it to start like yesterday, and the waiting has been very tough for him.

Do you wonder why? Well, he is anxious to get back to our neighborhood school - last year we tried a different school with an emphasis supposedly on students with hearing impairments. (Didn't work). He's anxious to see the teachers and staff who think he is just the bee's knees. He's anxious to get back to the special basketball squad for students with disabilities at the school. But mostly, he's anxious to get back to see THE GIRL.

I have to put THE GIRL in all caps because it completely expresses the joy in his eyes when he thinks of her. THE GIRL actually graduated a year ago, but because she couldn't find employement, and because she was receiving special education services and was not yet 22 years old, she can apparently decide to come back to school this year.

When Ronnie heard that it was like the heavens opened and the angels started to sing.

Me? Not so excited.

You see, THE GIRL is a player. Moving between boys faster than a constant lane changer on a busy highway. But when those moves bring her back to Ronnie with many proffered statements of undying love, he melts into a puddle of goo!

I just wish there were ways a mother could warn her son about THOSE GIRLS such that the son would believe, understand and move on to the girl, the lower case girl that would hold his hand without furtively checking out every other boy that walked by, the girl that wouldn't constantly say "I love you", but would show in her eyes that Ronnie was important and special to her.

Any lower case girls that might be attending Tucker High School in 5 days and who are willing to find out just how special my son is, call me.

Hunter

I'm sure most of you have already seen or heard this story. Three year old Hunter from Nebraska is Deaf and has a name sign. Problem is - his name sign resembles making a gun shape with his hands. (You can see the sign for Hunt at the www.aslpro.com website). Hi school has problems with that, and prefers that he spell his name using the ASL alphabet.

I don't know about Hunter, but if my Ashley was told to letter sign her name rather than use her name sign, she certainly couldn't have done it at age 3. Heck, she can't do it now, but she knows her name sign and uses it daily.

To me, a name sign is as personal as the name itself. Asking a Deaf person to change their name sign would be tantamount to asking you to change your name completely. And it is just plain wrong.

Here's a great article from Deaf mother, Karen Putz, that I believe sums up the issue very well:

When a School Tells You to Change Your Child's Name

So what is your take on this? Should Hunter change his name sign, or should the school stop overreacting?

Here is Hunter's Facebook page

Special Exposure Wednesday

Track and field ended last night. Ronnie is going to really miss it, at least until wheelchair basketball starts in mid-September...

Standing Tall

Recently some of Ronnie's doctors as well as his physical therapist have decided that Ronnie needs some more upright time, time not spent sitting in his wheelchair. Apparently, being upright will aid with digestion, avoiding urinary tract infections and will help him avoid osteoporosis in the future. They've all said that it is a good practice for someone who is paralyzed to get into a standing position on a regular basis.

The first thought was that Ronnie would need a stander, a device that he would get strapped into for some period of the day, which would allow him to stand up. He could do school work - art class, for example - or he could do homework or even something like washing the dishes while being upright. But then the physical therapist and an equipment representative hit on another idea - a standing wheelchair.

There are two manufacturers that make manual, standing wheelchairs. There are a lot more that make power standing wheelchairs, but Ronnie does not need a power chair (even though he would love one so he could go fast around his school campus!). The equipment rep is going to contact the two manufacturers and see if we can get one of each chair for Ronnie to try.

He's pretty excited about it, and I think if it works, it will help not only with health benefits but also with social benefits. He will be able to finally be at eye level with his peers (and kissing level with his girlfriend!), and I think he will like that very much!

Here are some pictures of one of the chairs:

Getting Ready

We've got pencils and pens - notebooks and composition books - hand sanitizer and tissues - backpacks and lunchboxes. We've got new clothes and shoes and haircuts.

We've also got a spare G-tube, KY Jelly, ibuprofen, and tylenol. We've got wheelchairs and standers and a cane, catheters and lubrication. We've got seizure medicines, syringes, and the requisite forms that allow the use of those things.

Gives new meaning to the words "School Supplies."

What does your back to school list look like?

Tick Tock - Ice Cream!

The final day of our vacation took us to a clock and watch museum (sounds boring, eh? But really it wasn't), and to the Turkey Hill Ice Cream Factory.

The clock and watch museum was tucked away in a residental neighborhood just a few blocks from Turkey Hill. It obviously has some wealthy patrons because the place was huge, packed with tons of history, and one of the most well-maintained museums I have ever visited.

There were clocks and watches of all sorts, even one that used water!

After spending time in the museum (get it - spending time!), we made the short drive to Turkey Hill. Yummmm!!

We donned the appropriate hats - well, everyone but Ashley donned hats - she still will not tolerate anything on her head, and Ashley even found her name on one of the displays!

Ashley and Ronnie attempted to milk the lifesize fake cow, and judging by their ewwww! reactions, I'm betting they will never ever come close to milking a real cow.

And then it was ice cream sampling time. All the ice cream we could eat..Yes, I said ALL THE ICE CREAM WE COULD EAT. That alone was worth the price of the vacation!!!

We had a wonderful week in and around Lancaster, PA and I highly recommend it to others who are looking for a great family getaway!

Hershey Gardens

The same day that we ate our weight in chocolate, we also visited Hershey Gardens. I like the think that all the walking up and down the hills of the garden helped cancel out the calories from the chocolate, but in all honesty, I probably would have had to walk 24 hours a day for a week for that to really happen!

Hershey Gardens were beautiful! We have a family membership to the botanical gardens in our city, and with that we are able to visit other gardens around the country at no cost. It's a real bargain!!

We started the day early in the gardens. There were no crowds and the morning mist was just leaving the well manicured lawns and beautiful flowers. Here's a picture from the gardens where you can see the Hershey plant and Hershey Park (an amusement park) in the background.

Many flowers, including roses, were in bloom, and Chip got some great pictures.

The highlight of the visit was the Children's Garden, including the butterfly exhibit.

Besides flowers and butterflies, the Children's Garden was full of music! Ashley was able to play an outdoor xylophone and stomp her feet to play another instrument. Ronnie even got on the stomp-your-feet thing and jumped up and down in his wheelchair to make music!

If you are ever in Hershey, a visit to the Gardens would be well worth your time!!

Tomorrow - Tick tock, ice cream time!

CHOCOLATE!

Hershey Pennsylvania is just a hop, skip and a jump away from Lancaster, so of course we had to visit to see if the town really did smell like chocolate! It didn't, at least not the day we were there, but that in no way diminished the 'air' of chocolate that permeated the town.

Walking into the Hershey Chocolate experience was a diabetic's worst dream. Fortunately, none of us are diabetic!

Our first activity was to attend a chocolate tasting. Sitting in a large room with lots of other guests, placemats, bottles of water, and six different types of chocolate were put in front of us. We listened to a short story about the origins of chocolate, and then were instructed on how the tasting would go.

We were not to bite and chew our chocolate, but rather just let it dissolve on our tongues. But before the chocolate even entered our mouths, were were instructed to snap a piece of the chocolate up close to our ears and listen for the sound. Who knew that different types of chocolate had different sounds - some snap, some have a dull thud when broken, and some have almost no sound at all. Here is a picture of Ashley listening as I break a piece near my ear.

Ashley wouldn't taste the chocolate so that just meant more for me!

I discovered that my favorite was the fruity, nuttiness of dark chocolate, but the boys both preferred the milk chocolate.

After the tasting, it was on to making our own candy bars and designing the packaging for them.

Here are the vats of chocolate used for making the bars:

After donning aprons and hair nets, we chose the type of chocolate we wanted and as many fillings as we wanted. White chocolate was our choice, and the fillings ranged from pretzel bits, rasperry bits, nuts, and chocolate chips. After the bar was constructed, it was then drenched in milk chocolate and sent to the packaging area.

The packaging could be personalized in whatever way one preferred, and finally the completed bar was tucked into a metal tin for enjoying later.

Of course, there was a store that stocked and sold every single type of chocolate Hershey makes as well as the regular touristy stuff like tee-shirts and hats. Though the facility was packed with people, and the restrooms were far from accessible, the visit to Hershey was one of our favorite things during the vacation!

Tomorrow - the hills, flowers, and butterflies of Hershey

Twisting the Day Away

On Tuesday of our vacation week we first visited the oldest pretzel bakery in the country, the Julius Sturgis Pretzel Bakery. Located in Lititz, PA, the pretzel maker is celebrating its 150th year of operation this year. Since we all love pretzels, and since it was a rainy day and we needed an indoor activity, we headed out to tour the bakery.

Located in an ancient building, the bakery was suprisingly accessible. Ramps had been retrofitted into the building, and although they were pretty steep in some places, it was nice to be able to access the entire tour. Even the restrooms had been redone, and were the nicest I found during the whole vacation.

The first part of the tour involved making our own pretzels, and learning about the history behind the design. Really really fun, although Ashley had her own approach to making the pretzels...

Ronnie and Chip did took a much more traditional approach with their pretzels, and the result was awesome...

We toured the old ovens (pictures are black and white because the lighting was not conducive to color pictures), and learned how pretzels were made before the automation of today...

When the tour was over, pictures had to be taken by the giant pretzel out front, of course!

The rest of our day was spent touring the peaceful countryside and visiting some Amish shops. Since the Amish don't like pictures being taken, I have none to share with you. But, as with the first day, I loved the peaceful, quiet feeling I had when the day drew to a close!

Tomorrow - Chocolate, chocolate, chocolate!!!!

Visiting the Plain People

Instead of our normal summer vacation to the beach, we decided to explore parts of the US that we had never seen. This summer's choice was the Amish County of Lancaster, Pa.

We rented a van so the long trip would be more comfortable than trying to pack all our suitcases, wheelchairs, and other medical supplies in my sedan. It was a good choice and made the trip much more pleasant. It also reminded me how much I want a van to make loading and unloading wheelchairs easier on my back!

We headed out early in the morning and battled the horrendous traffic around Washington, DC and Baltimore, and then finally ended up in the beautiful countryside of Pennsylvania. My home state, Virginia, has some beautiful farmland, but I don't think I have ever seen prettier lands and views than those of Pennsylvania. Everything just seemed so 'orderly' and that definitely appealed to my OCD personality.

We weren't long in Pennsylvania before we encountered our first Amish buggy. Though the horse pulling the buggy seemed to be moving pretty fast for a horse, the buggy held up the automobile traffic, and forced us to slow down until passing was safe. But in a strange way, I enjoyed that. After the craziness in DC and Baltimore, having to slow down was a good thing. I began to feel the tension leave my shoulders, and my hands no longer had a death grip on the steering wheel. We had specifically mapped our route to include the countryside, and I am so glad we did.

Before the vacation, I did some research on the Amish. I discovered that they trace their heritage back hundreds of years, and yet, despite all the time that has passed and the many changes that have taken place in society, they still live and work much as their forefathers did. Their families and their farms are their top priorities, second only to God.

The Amish are very devout in their faith. They believe in the literal interpretation and application of Scripture as the Word of God. They take seriously the Biblical commands to separate themselves from the things of the world. They believe worldliness can keep them from being close to God, and can introduce influences that could be destructive to their communities and to their way of life. They do not own or operate automobiles, believing that cars would provide easier access to the ways of the world. Their plain clothing styles have earned them the name "Plain People".

Their separation from the rest of society actually helps to strengthen their community. Amish children attend Amish one-room schoolhouses through the eighth grade. Amish worship services are held every other week in one of the member's homes. Socializing is an important part of Amish life.

The Amish have a strong sense of community spirit, and often come to the aid of those in need. Their barn raisings are a good example. Neighbors freely give of their time and their skills to help one another.

The Amish are generally private people and often find all the attention and curiosity about their lifestyle disturbing. They believe that the taking of photographs where someone is recognizable is forbidden by the Biblical prohibition against making any 'graven image'.

Once we arrived at hour hotel, the Eden Resort of Lancaster, we decided to just spend the rest of the day relaxing, and deciding where our adventures would take us the next few days. I will share those adventures with you during the rest of this week.

While the beach is still my favorite place in the entire world, I am so glad we decided to make this trip, and I look forward to exploring many other new places with my children in the future!

Soon, Very Soon!

I Do

As a parent, do you ever feel like you should be doing more for your children?

I do.

Do you wish you had more time and more energy, and do you worry that your lack of those two things will have an extremely negative effect on them?

I do.

Do you wonder what your children see when they look at you? Do you wonder if it good or not so good?

I do.

Do you worry that they may not completely understand your decisions to fight the battles you feel are important to their health and well-being?

I do.

Do you sometimes feel like you might not be fighting the right battles - that perhaps you are focusing on the wrong things?

I do.

Do you think they resent that you are at their school so often, talking to staff and administrators, and that perhaps they would just rather you be at home with them?

I do.

Do you worry that they are tired of seeing you challenge doctors and nurses, even if the challenge is in your child's best interest?

I do.

Do you think they feel the deep abiding love you have for them when you are fighting 'systems'?

I do.

Do you set your health and well-being aside so that your every thought and action is related to making them happy and prepared for a life without you?

I do.

Even though you are completely drained and exhausted beyond words, do you still have a tough time saying 'No' when someone asks for help, help you know you have the expertise to provide?

I do.

Do you look at other children - foster children, homeless children, children not receiving what you think they deserve - and want deep down in your heart to take them all home with you? Do you feel utterly depressed that you can't make the world a better place for them?

I do.

Do your fear your child's death before your own, but then also wonder what will become of them if you are no longer there to take care of them?

I do.

Does your heart just ache sometimes because you can't take away all the pain and rejection your children will encounter?

Mine does.

Do you pray for answers and strength to keep going when somedays you would just rather curl into the fetal position under your bed covers?

I do.

And do you feel that all you do accomplish is 'worth it'?

I do and it is, it really is....

Special Exposure Wednesday

I don't know which is more fun - Watching Ronnie practice his track and field skills or watching the faces he makes while doing that!

Ronnie would be a shoo-in for the Olympic diving competition!

Acceptance

How do you define acceptance? What does the word mean as it relates to you or your family member with a disability?

Do you get angry if you think people are not accepting, and I don’t mean just a token acceptance?

Do you feel like all, most or none of the people in your life accept your family member with a disability?

Have you done things trying to force people to accept your family member with a disability? If so, have they worked?

Have you given up on trying to make people accept your family member with a disability? If so, was it an easy choice and does it remain easy to live with that approach?

How does your family member feel about acceptance? Do you believe they are happy with the circle of people around them at this particular time, or do they wish for more?

I’m dealing with the whole issue of acceptance and could really use your advice…

Trying To Find A Balance

One of the things I have always struggled with as a parent is how much of a right to privacy my children should have? With my children approaching young adulthood, that question is on my mind constantly. So I'd like to know what you think? How have you dealt with the following issues:

Do you think your teenager has a right to privacy?

Are there some things you believe that teenager should be able to keep private and some things that you as their parent should have a right to see?

Do you check their email – reading what they send and receive?

Do you check their list of visited sites on the Internet?

Do you have any parental control software on their computers?

Are your children allowed to use their computers alone in their rooms?

Do you feel as a parent you have a right to go through anything in your child’s room, school locker, school notebooks, etc?

Are your children allowed to use the phone in a private place in your house?

Does your child have a cell phone with no use restrictions?

Do you review a detailed bill of their cell phone usage?

Do you know all your child’s friends, or are they allowed to go to houses of people you have never met?

Have you met the parents of your child’s friends?

If your child drives, do you check the car’s odometer?

Does your child have a curfew, and consequences for missing that curfew?

Do you feel your are more strict or less strict as a parent than your parents were with you?

What is your biggest fear as it relates to you children?

Lost and Sound

Music is one of the greatest of all human experiences; millions of us fall under its spell every day, and it engages more parts of the brain than any other human activity. But what if you lost the ability to hear it? Could you find music again... and could music find you?

Lost and Sound is a moving creative documentary, made by a partially deaf filmmaker.

It weaves its way through a startling world of sound and silence, via the ears and brains of three unusual people as they try to re-discover music: a dancer deaf since birth, a young pianist who lost her hearing as a baby, and a music critic facing sudden partial deafness.

Visit lostandsound.org to keep in touch with Lost and Sound, and request a screening near you.

Obviously Not Working

I had no idea when I started reading an article from the New York Times titled, "Disabled Students Said to Be Almost Twice as Likely to Be Suspended" that I would see statistics from my school district here in Virginia.

But there we were - Henrico County, Virginia - in all our splendor. According to the article, "In some districts, black male students with disabilities were suspended at a strikingly high rate. In Henrico County Public Schools in Virginia, the report’s authors found that close to 92 percent of all black males with disabilities had been suspended one or more times during 2009-2010."

I knew that my district has some issues relating to the education of children with special needs. Heck, I've filed two complaints and been to due process myself. But because my children have never had any major behavior problems while in school, I haven't heard about all the suspensions.

Perhaps it's time for my school district, and apparently a whole lot of other school districts, to find another solution. Suspension does not appear to be working at all....

Special Exposure Wednesday

Most of the time, Ashley walks wherever she wishes to go. But when we are walking long distances, say around a theme park or at the mall, she prefers her wheelchair. I prefer it under those circumstances also because if she has a seizure, it is a lot safer for her.

She doesn't need a specialized wheelchair with positioning support or other such bells and whistles. She pretty much uses the same type of chair that someone's grandmother might use. But she does still like for it to be stylish!

Ashley got a new wheelchair this week - all shiny black with blue streaks - and she loves it! She never, ever uses her chair in the house, but on the day I brought it home, she insisted on using it exclusively! I had to draw the line when she wanted me to push her to the bathroom, but I did let her enjoy it while working on her iPad!

Thar She Blows

If you live on the East Coast, you know we are deep in the heart of hurricane season. Though we are already up to names starting with E and F, so far we haven't had anything major roll through town. And after last year's 8 days of no power following a hurricane, I certainly don't want another to come our way. But I do want to be ready.

If a hurricane or other such disaster were to blow your way, do you have an emergency kit prepared? If you or someone in your family is disabled, be sure to include special items in your supply kit in addition to the basic supplies. If you take medicine or use a medical treatment on a daily basis, be sure you have what you need to make it on your own for at least a week, maybe longer.

When assembling your emergency kit, be sure it’s not too heavy or bulky for you to carry. You might need to store items in more than one container or a suitcase with wheels. Here's a list for your consideration:

• Include extra eye glasses.
• Hearing aid batteries, wheelchair batteries and oxygen.
• Make a list of prescription medicines including dosage, treatment and allergy.
information. Talk to your pharmacist or doctor about what else you need to prepare.
• Make sure you have contact numbers for your pharmacy and medical supply providers if you require oxygen, dialysis supplies, diabetes supplies, etc.
  Include a list of doctors, relatives or friends who should be notified if you are hurt.
• Include copies of important documents in your emergency supply kit.
• Have copies of your medical insurance and Medicare cards readily available.
• Keep a list of the style and serial number of medical devices or other life-sustaining devices. Include operating information and instructions.
• Make sure that a friend or family member has copies of these documents.
• If you have a communication disability, make sure your emergency information notes the best way to communicate with you.

And in addition to the emergency kit, the Red Cross has developed a really cool iPhone/Android app. It gives instant access to local and real time information on what to do before, during and after hurricanes. And one of its most important features, at least in my opinion, is its One touch “I’m safe” messaging that allows users to broadcast reassurance to family and friends via social media outlets that they are out of harm’s way. Here is a link to download the app from the Red Cross:

Red Cross Hurricane App
Above all else, stay safe!!!

Let The Creativity Flow

As most of my regular readers know, this blog is titled Pipecleaner Dreams because of the wonderful wire-pipecleaner-bead creations Ashley has made for years. Her work has found its way until the homes of our friends, her doctors, and other people with whom she feels worthy of sharing her art.

Ashley has embraced her limitations - her lack of vision - but still maintains her creativity by using her sense of touch to create her art. My brother shared the following video with me, and it shows that by embracing one's limitations, you can actually drive your creativity. I can't embed the actual video but here is a link...

Embracing Limitation To Drive Creativity

Shop For A Cause

Do you like to shop? Do you like supporting worthy causes? If so, I have a deal for you!

Ronnie’s wheelchair basketball team is selling “Shop For A Cause” passes to raise money for their team. The team has several children whose parents are unable to afford the $3000 specialized wheelchairs needed for basketball, and the team wants to travel to tournaments held all over the country. But, since the organization that sponsors the team – Sportable - is a non-profit organization, the only way the players can raise funds to help other players and be able to travel is to have a fundraiser. Unlike most fundraisers, however, you can benefit from this one as much as the players.

Shop For A Cause will be held at every Macy’s Department Store across the country on Saturday, August 25th. Each shopping pass costs $5 and the Sportable Spokes (the wheelchair basketball team) keeps 100% of the sales.

On August 25th, Shop For A Cause pass buyers:
• Can shop all day at the Macy’s of their choice
• Receive 25% off regular, sale, and clearance items
• Can drop their savings pass into a drawing for a $500 Macy’s gift card
• Support the Sportable Spokes!!!

If you live in my area, you probably already know how to get in touch with me to buy a pass. If you live elsewhere and have a Macy's in your town, email me and we can figure out how to get a pass to you.

I know Ronnie and the rest of the Sportable Spokes would really appreciate your support!

20 Most Wheelchair Friendly US Cities

While doing a little research on a city we will visit on vacation this year, I ran across an article from the Christopher and Dana Reeve Foundation that listed the 20 most wheelchair friendly cities in the US. The city we plan to visit, and the city in which we live are not on the list, but I will certainly keep it in mind for future vacations.

The cities were judged on the following criteria:

First the judges looked at how hospitable a city's climate is for those using a wheelchair and tried to avoid cities with extremes in temperature or snowfall. Then cities were ranked based on their air quality, number of physicians, rehab specialists and rehab centers, accessible fitness and recreation facilities and paratransit systems.

The judges also looked to see if the city population contained large numbers of physically disabled people and whether those people have been able to get employment.

Lastly, judges examined the age of the city (old building are harder to make accessible) and checked out the spending and eligibility requirements for Medicaid.

So, what cities came out on top? The cities named are as follows, in ranked order:

1. Seattle, Wash.
2. Albuquerque, N.M.
3. Reno, Nev.
4. Denver, Colo.
5. Portland, Ore.
6. Chicago, Ill.
7. Birmingham, Ala.
8. Winston-Salem, N.C.
9. Orlando, Fla.
10. Lubbock, Texas
11. Miami, Fla.
12. Tampa, Fla.
13. Durham, N.C.
14. Fort Worth, Texas
15. Virginia Beach, Va.
16. Arlington, Texas
17. Baltimore, Md.
18. New Orleans, La.
19. Arlington, Va.
20. Atlanta, Ga.

I was pleased to see two cities in my home state - Virginia Beach and Arlington - as well as two of my favorite cities to visit - Baltimore and Atlanta.

So, do you see your home town? If not, what could your city do to make itself more wheelchair friendly?

Special Exposure Wednesday

An iPad is a WONDERFUL tool to have during the long summer months!