A New Girl

I'm very interested to find out if Ashley's teacher and other school staff notice a difference in her now that school is back in session.

Ashley and I worked very hard over the summer to reduce and then eliminate two of her medicines, medicines she has been on for over 10 years. The side effects of those medicines include drowsiness, agitation, and a general malaise. I think the difference is pretty astounding, but am interested to see if others notice.

When Ashley met with her neurosurgeon last week, he noticed a difference. He believed she was more aware, more engaging, more in-tune with the world around her, and I agree completely. Of course, that comes with its own set of challenges!

Those teenage behaviors which can wear a mother down are more pronounced now. There is more emotion, more opinion, and yes, more drama. But there is also more understanding, more learning, and more 'presence'.

It is difficult at times but I love it!! Let's see what the school staff thinks :)

Smoke, Soap and Pop Rocks

We took a trip this past Saturday to the Williamsburg Farmer's Market. In retrospect, it probably was not the best choice because of the heavy smoke that blew northward from the large fire at the Great Dismal Swamp. We first noticed it about halfway to Williamsburg. It reminded me of driving through heavy fog in the mountains of Southwest Virginia. Even with the windows closed on the car, the smell was very strong.



When we arrived in Williamsburg and walked to the Farmer's Market, it felt as if we were standing around a campfire with all the smoke blowing directly in our faces. After only 30 minutes, our eyes were burning and we were all coughing.



So, our trip was cut short, but we did manage to visit a lot of the vendors at the market, and I found a few of my favorite things. Also, because the market is set up in the middle of downtown Williamsburg, we were also right by the Wythe Candy Shoppe, and of course we had to make a stop there also! Check out the the picture of Ronnie trying Pop Rocks for the first time!



Here are some of my finds from the Farmer's Market:



Some of my favorite goats milk soap!







Pear Butter - yumm!







Lemon Blueberry Bread with Fresh Blueberries and Cream!







And from the Wythe Candy Shoppe, pear, watermelon and buttered popcorn jelly beans, and fudge, of course!









But the highlight of the day was giving Ronnie his first taste of Pop Rocks and watching him freak out!!!

On a Boat Looking at Boats

When we were visiting the beach two weekends ago, the temperatures were in the 100's, and the heat indices were around 110 degrees. That was even too hot for the actual beach. So, we tried to find things to do indoors, in air conditioning.

One of the places we decided to visit was Nauticus, in downtown Norfolk. According to the Nauticus website "NAUTICUS inspires and educates with engaging & interactive experiences that celebrate our connections with today's maritime world. Nauticus is a contemporary museum that uses the natural setting of Norfolk's harbor to showcase global maritime commerce and the world's largest Navy."

I worried that it might be a little too history intensive, and therefore, boring for Ashley because she prefers more interactive museums. But it was great! One floor of the museum's three floors was dedicated to marine life. There were lots of exhibits of fish, crabs and the like, and Ashley even got to touch a horseshoe crab.

Affiliated with the museum is a boat tour of the Norfolk Naval Station. The boat had both an air conditioned section and an upper deck that was outside. We chose the air conditioned section, and had some wonderful views of the Naval Station. We even saw the USS Enterprise! Here are some of the pictures Chip took of our visit:





This is Ashley signing "BOAT":









I'm not sure how Ronnie felt about being on a boat, but Ashley loved it!

My Mighty Sprite

It’s so amazing to watch Ashley do things that doctor said she would never do – that others said her disability would prevent her from doing. This past week was a perfect example.

We scheduled a trip to the beach. The particular beach we visited was about a two hour drive from our home. Along the way we planned to stop at a museum, and we had plans during the week for boat trips, playing on the beach, seeing a movie, staying in an hotel, and of course, eating all our meals out in restaurants.

Imagine being deafblind and doing all those things. New smells, new textures, schedules thrown out the window, and a lot of people around that you don’t know. All my training in deafblindness said to go slow, introduce new things carefully and slowly, and try to understand the hesitation the person with deafblindness might exhibit. Well, that was all a bunch of hooey as it pertained to Ashley.

Rather than hesitating, she often led the way. If we stayed too long in the hotel room, she was asking to go – go anywhere – just go. She tried several new kinds of food, including fried pickles (yuck!). She slept very well in a strange bed. She loved all the sightseeing trips, and adored the boat trips. She was extremely happy the whole time, and just adapted to whatever we were doing. It was almost as if she had no disabilities.

I’m not sure what intrinsic quality Ashley possesses that leads her unafraid into new situations, but I wish I could bottle it. She is such a delightful person, and I just know she would love to get in the car and spend the next year exploring the United States! If I could retire, we might just do that.

When people observe her, they often don’t believe she is deafblind. I can assure you that she really is, but her fearlessness and zest for life almost always overpower that disability. She lives life to the fullest, and I am so very proud of her!

Gone Fishin'

Well, not really, but I do need a little break. I'm taking a few days off from posting - from thinking - from working - from not napping - from schedules - from living life on a time clock.

It's summer, and summer means a slower pace, right? Mine is anything but that. But for the next few days, it will be slower. I hope Ashley will let me sleep just 15 minutes longer. I may take a bubble bath after she goes to bed at night. I will savor a dinner, not just inhale it. I will listen to the birds, and dead head my flowers. I will scratch mosquito bites and wear flip flops until bedtime. Heck, I might even have a wine cooler or one of my mother's drinks of choice, a Tom Collins. (I have no idea what a Tom Collins is but it sounds like summer, don't you think?).

So enjoy your weekends, everyone. Stay cool and I will see you all again very soon.

Special Exposure Wednesday

Eating cake is a religious experience for Ashley! Especially cake with pink flowers! (Thanks for the great picture, Chip!)

Mr. Debonair

The prom was a huge success for Ronnie! It was hard for me to tell what made him happier - having a senior girl ask him, getting all dressed up in a tuxedo, or dancing the night away. Here are some pics taken by my son, Chip, the burgeoning photographer...

Paralympian in Training

Saturday was Paralympic Experience Day in our city. Sponsored by the US Paralympic team and Sportable, the local organization that runs the wheelchair basketball team on which Ronnie plays, athletes with disabilites were invited to try out some of the paralympic sports.

Ronnie had a blast!

He tried track and field events, including the javelin throw. He did such a good job that the Paralympic coach said he should definitely consider competing.



He also tried the racing wheelchairs and even had a chance to race Anjali Forber-Pratt, the world champion in the 200M and double bronze medal holder from the Paralympic Games in Beijing, China.





Ronnie really is athletically talented, and I can see him participating in the paralympics one day. We will start that journey with his participation in the 2011 Mid-Atlantic Wheelchair Games, held in June of this year.

Somebody's Smiling!

Ronnie got a big surprise when he got home from school yesterday - his very own basketball wheelchair! He had been borrowing an old one from the organization that sponsors the wheelchair basketball team (Sportable), but as of today, he won't have to borrow one any longer.

I think he's just a little bit happy!!

Chip got it all put together for him before the bus arrived, including the big red bow!



Then we made him close his eyes while we brought it out of hiding...



And there's the smile!!!



He then had the chance to try it out at basketball practice! (That's his volunteer interpreter standing.)



He's very happy - especially with how fast it can go :)



Way to go, my handsome son, way to go!!!!

Smart Things

I've done some really dumb things in my life, but I've also done some really smart things. Here's a short list of my smart things:

• I bought carpet which is the color of dirt for my whole house.


• I taught and required my kids to begin doing their own laundry at the age of 12.


• I put lots of mulched areas in my yard - so much less mowing.


• I gave up accounting for my job in the computer industry.


• I got out of an abusive marriage right after the birth of my first child.


• I took both my school district and my state's Medicaid office to court - and won

And now just to balance that list out a bit, here's one really dumb thing I've done recently:

• I bought a car with an off-white interior.

So how about you? What are some of the smart things you have done in life?

A Life Rich With Enough

My house isn’t spotless, but it is clean enough.

The meals I make for my children are not often gourmet meals, and we do eat our share of junk food, but I am a good enough cook to keep everyone healthy and well-fed.

My children don’t get everything they ask for, or get to go everyplace they want to go, but they have enough to entertain and challenge them, and way more than a lot of children have.

My yard and garden are not the showplace of the neighborhood. During the Fall, the leaves stay on the ground a little longer than they should. During the Spring and Summer, the grass doesn’t always get mowed as soon as it should, but the flowers that grow wild and colorful are enough to bring a smile to most people’s faces.

We’re not the first family to clear the snow from our walkways and driveway, but we can make some awesome snowmen, and we have enough of a path to get to where we need to be.

My laundry basket is never empty but everyone always has enough clothes to look their best and meet their needs.

My children and I may sometimes long for more, but we know we are blessed and definitely have enough, and for that we are always grateful.

Good News Friday

(picture by Matt Kohashi/Gallaudet University Athletics)

Once again, I am thrilled that it is Friday! AND....this is a long weekend because of President's Day on Monday. The weather is beautiful, we are all finally well, and I can't ask for much more than that!

First some personal good news - I have finally saved up enough money to order Ronnie a specialized basketball wheelchair! The order has been placed, and in about 5 weeks, I plan to surprise him at basketball practice! Don't anyone tell him and spoil the surprise!

Here are a couple of other good news story from the week. Enjoy and I hope you all have a wonderful weekend!

Deaf Team's Standout Season Draws Cheers

Mental Health Awareness and Civility Promoted by a Very Unlikely Source

Good News Friday

It's been a rough week at our house. Both my oldest son and I have pneumonia - Ashley is recovering from an ear infection - and there just hasn't seemed to be enough time to complete even our normal activities of life. But, Friday is here, along with some rest, some couch time, some fun outings, and time to recharge our batteries.

These good news stories below, shared by my dear brother and some special friends, will go a long way towards helping us recharge. Maybe they will help you also. Enjoy...

500 Posts and Counting

Teacher Born With Down Syndrome Breaks Sterotypes

Deaf Dog Trained in Sign Language Adopted by Deaf Children

Lazy Legz

Ronnie is working very hard on his braces/crutch skills. He has realized that the more he practices, the faster he begins to master walking with the crutches. This past weekend when he was practicing, Chip and I told him that he not only needed to learn to walk but that he also needed to practice dancing. He wiggled his behind a bit and was all smiles!

Then I showed him the video below so that it can serve as even more inspiration for him! (Coincidentally, the name of Ronnie's wheelchair basketball team is Lazy Legs, and the name of the dancer in the video is also Lazy Legz!)

Square Pants and All

Part of our school day routine is to watch an episode of Sponge Bob Square Pants while waiting for Ashley and Ronnie’s school bus. This morning’s episode found Bob very unhappy because he wasn’t normal.

Sponge Bob’s friend, Squidward, yelled at Bob about how abnormal he was, listing all the things that he (Squidward) found to be weird – Sponge Bob’s freckles, the shape of his body, the way he talked, how happy he always was.

Bob was crushed! He immediately embarked on a campaign to become more normal. He bought a book about how to be normal. He engaged a teacher who could help him learn to be normal, and he practiced and practiced being normal.

Once he felt he was normal enough, Sponge Bob headed off to work – all the square edges rounded, his speech more refined, his clothes just so. At first Squidward and Mr. Krabs, Bob’s employer, loved the changes. The kept complimenting Bob for taking the initiative to be more normal, and they complimented themselves on having the foresight to advise Bob that his abnormality was just wrong.

It wasn’t long though before Squidward and Mr. Krabs began to miss the Bob that they knew. The felt he was not just normal but also boring. They truly missed his “Sponge Bobness.” Finally, it was Patrick, Bob’s best friend, who told him that he was best when he was himself. Sponge Bob immediately worked to restore himself to his former fun-loving, shrill-voiced, square-bodied awesomeness, and the episode ended with everyone happy again, even Squidward, the show’s perpetual grump.

I don’t know about you, but I refuse to let my children be “taught’ or bullied into being something they are not. I love their quirkiness, the individuality, the way they look and talk and approach the world, and especially their happy natures. Even their “Sponge Bobness”!!

Thanks for the reminder, Sponge Bob!

Starting Early

The kids and I decided to visit the Williamsburg outlet stores this weekend and do some Christmas shopping. With the economy, more specifically my economy, being in the shape that it is, Christmas purchases must be spread out over several months. Of course, the primary reason Ashley wanted to go was to visit the Converse Shoe Outlet!



Chip had decided that he would get Ashley a new pair of Converse sneakers (pair number 14!) for Christmas, and he wanted her to pick out the color she wanted.



Of course, she wanted them all!!



But she finally settled on orange, and they are now safely tucked away in the Christmas present hiding place!

If only everyone was so easily pleased...

A Good Day

Today was a good day...

Ronnie had his weekly post-surgery follow-up appointment with the urologist. He is doing really well, and we won't have another appointment for six whole weeks!

I finally received the correct feeding bags from my new medical supply company.

Ashley and I took a short nap this afternoon.

The high school bus driver for the upcoming school year called, and he will pick Ashley and Ronnie up at 7:52 am - which will work out perfectly for me to get to work on time.

I had a wonderful Cobb salad for dinner.

I booked the vacation home on the Outer Banks of North Carolina that we will travel to over Winter Break from school.

I don't have to iron clothes because I don't have to go into the office tomorrow.

Big Brother is on TV tonight and then I will be able to read for about an hour before calling it a night.

Nothing really eventful - but a good day, nonetheless.

Happy Friday, everyone!!

Two Down, One To Go

When Ronnie had surgery a month ago, he came home with three different catheters coming from his body. Two were designed to keep his bladder from filling because he had just had a bladder augmentation procedure. The other was from a Malone procedure, a re-routing of a part of his bowel to make life simpler for him.

The first catheter to go was one from his bladder. But the second one had to stay in another 2 weeks. I'll spare you the details of why he and I both HATED that last bladder catheter because I don't want to cause you to lose your breakfast, lunch or dinner.

Today, though, we celebrated! The second catheter from his bladder was removed!! After an imaging study to make sure there were no leaks in his bladder, the doctor yanked the catheter out - Ronnie yelped - and then smiled!

Even though we now have to collect data on the volumes removed from his bladder, it is WONDERFUL to not have that second catheter. He can now actually start wearing his own pants and not have to continue to borrow the large size from his brother.

In another month, the very small catheter still in place because of the Malone procedure should be removed and replaced with a Chait Trapdoor - something very similar to a G-tube Mickey button.

My goal was to have Ronnie all recovered in time for school, and I think we just may make that!!

Way to go Brave Boy!!

Summertime, and the Living is (not) Easy

I’m exhausted and it’s all Summer’s fault. Don’t get me wrong – I love Summer – but the vision of relaxing on the veranda, the pace of life slowed down, is all a myth – at least in my family.

Summer brings lots and lots of yard work to do. The flowers I planted are beautiful, but they need tending and watering and weeding. That’s not an issue in the Winter.

Summer brings double the loads of laundry – piles of wet swimsuits and towels, sweaty clothes from playing outside.

Summer brings lots more opportunities for activities – playing in the neighborhood pool EVERY day, baseball games, trips to the beach and the park, daytrips to the mountains that snow makes inaccessible in the Winter, museums and other learning opportunities to keep the children’s minds from turning to mush, trips to theme parks and water parks, and visits with friends and family that often don’t happen in the dead of Winter.

Summer brings sand in the car to vacuum out, pollen on the windowsills to dust, floors and carpets to clean constantly because the dirty foot traffic is multiplied exponentially.

Summer also brings lots and lots of doctor visits, hospitalizations, and medical procedures – all those things I put off during the school year to minimize the time away from class.

The stress of summer may be a little greater this year because I have tried to pack 3 months worth of sun and fun into a month and a half. Ronnie’s surgery will put us all pretty much out of commission starting August 1st.

I really, really do love Summer. In fact, one of the reasons I like living in Virginia is because the seasons do change. About the time I am getting tired of Summer, Autumn rolls around. When I am sick of cold weather, viruses and snow, Spring arrives.

So Summer, I’m not blaming you, really, but could you slow down for just a day or so? And while you are at it, make sure the wine is chilled and the steaks are on the grill.

Hot Fun In The Summertime

Do you worry about your children regressing or losing skills over the summer? Do you hear the words, "I'm bored!" more than you would like? If so, I found a whole list of resources the other day to both keep my kids on track and keep them busy. Please feel free to add to the list if you like:

Reading!
Check out Reading Rockets' May 2010 newsletter on the subject.

Adventures in summer learning.
From Reading Rockets.

More about summer learning. Don't let your kids forget all they've learned this year! Discover how to stop the summer brain drain and make learning a fun part of your everyday routine.

Activities to keep kids with disabilities busy this summer.

Family fun.

Accessing summer fun. From Disabilities Unlimited.

Summer Fun 2010.
The guide from the Federation for Children with Special Needs.

Going to Washington, DC?
Check out the accessibility of the Smithsonian's 16 museums.

Express the self through art.
Get your child involved in VSA (formerly Very Special Arts), an international nonprofit organization dedicated to creating a society where people with disabilities (including physical, intellectual and developmental disabilities) can learn through, participate in, and enjoy the arts.

Find the adaptative sports equipment your child needs.
Let Disabled Sports USA connect you with the many devices and equipment that enable individuals with a range of disabilities to participate in sports such as fishing, cycling, and golf.

Getting physical.
Lots of great ideas and resources at the National Center for Physical Activity and Disability.

Check out the goings-on at national parks and federal recreation centers.

Gardening and other hobbies for those with disabilities.

Keys to a meltdown-free vacation.

All about accessible travel.
Tips, checklists and other resources for travelers with disabilities and their families.

AbleData's Travel Information Center.