Special Exposure Wednesday

How do I love thee? Let me count the ways...

You have kept the lights burning bright since the hurricane ravaged my town. You have allowed me to run fans to keep the heat at bay. Because of you, I can cook with my crockpot, my wok, and my electric griddle. You help me iron my clothes and dry my hair. You even wash my dishes.

Sure, you can be loud and obnoxious. My neighbors say the sound bothers them, but I think what really bothers them is that they don't have one of your family members.

You have kept me somewhat sane for 5 days now and who knows how many more are to come...

Thank you, my generator, from the bottom of my heart!

I Didn't Forget

I haven't forgotten to post today, but I am just delaying my post.

Ashley's appointment with the neurosurgeon is today. We will get the results of her recent brain MRI. So I've decided to delay my post until I have (hopefully) good news to share...

Stop back by this afternoon please...

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Here's the post-doctor update, and it's a good one!!

There has been no change in Ashley's three brain tumors. The neurosurgeon has watched her closely over the last 5 years and done too many MRI studies to count, and each and everyone was exactly the same.

The verdict? We can now wait 3-4 years for another study, unless of course I notice any changes like weakness, headaches, loss of function, etc.

To say that I am thrilled is an understatement. The MRIs were so very difficult for Ashley and the use of anesthesia was always scary for me.

The doctor did scan her cervical spine this past time, and he also noticed nothing of concern there. He did say she has a bit of arthritis, but if she's not complaining, then neither am I!!

It's a good day. Now if we could just get our power back on post hurricane Irene, it would be a great day!

Whew!

What a weekend! Hurricane Irene came for a visit, and turned our town upside down. As of last report, still almost a million people in Virginia alone are without power. We are one of those, but fortunately my generator is chugging away. It provides everything but laundry facilities and air conditioning.

The power company said it would be 1 to 2 weeks before all power is restored....

Here are some pictures for your viewing pleasure, and so you can breath a sigh of relief if you were not in Irene's path!

My neighbor to the right is a school teacher. She may be a great teacher, but she is not the best hurricane planner. I mean, who leaves plastic lawn chairs and empty trash cans sitting in the driveway when winds are projected to be 75 miles an hour.





She was also one of the folks who had tree damage. And, her tree decided to take out our fence!



Our neighbor on the other side had a tree that split and fell across power lines. I guess it's not dangerous since THERE IS NO POWER!



In our yard we just had a lot of branches fall - nothing major.



And I am very proud of my little peach tree for standing its ground! There were times when it was bent almost horizontal to the ground, but it didn't give up!



As it turned out, my immediate neighbors and I had it pretty easy. Check out this tree that fell across the road leading out of our neighborhood!



And because I felt a tiny bit guilty being the only house on the street with a generator, I decided to share our good fortune with all our neighbors the next morning!



I'm very glad it is over, and hope that no more hurricanes come our way this season!!

Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.

In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’

Obviously something is not working in our society when it comes to caring for a child with disabilities.

Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.

And then there are the parents who do not.

I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?

I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.

I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.

I’m tired of reading about children who die – children who could have long happy lives.

Is That Locust I Hear?

So, did you get to experience the great shake, rattle and roll this week? Just 35 miles from my home, a rare and unexpected earthquake struck. It was a 5.9 on the Richter Scale, and I realize that to folks on the West Coast that is no big deal. But to us here on the East Coast, it was like one of the biggest deals ever.

I was at work when the rumbling started. Never having experienced an earthquake, my co-workers and I were a little stunned at first, wondering just what was going on. And silly me, my first response was to reach up and keep my computer monitor from dancing off the edge of my desk. Then about 200 of the 400 workers in my building ran outside.

Who knew running outside was not the thing to do???

Who knew that standing on the top of an underground parking deck was not the thing to do??

Who knew that cell phone service would more than likely be disrupted?

I felt like I did on 9/11, all I wanted was to hear my children’s voices and know they were ok. But I couldn’t because no calls were going through. It is a horrible, horrible feeling to be in the middle of something major and not be able to know how my children are. I just wanted to go back into my office building so I could try calling on the land line, but the Capitol Police Officer stationed at the door refused to let us back in.

Finally, after about 45 minutes, we were told we could re-enter the building. I went straight to the phone, called home, and got the news that everyone, although a little frightened, was ok. Ashley even thought it was fun and spent the rest of the evening bouncing on her chair to simulate the shaking!

So, we’ve had the wildfire burning in the Great Dismal Swamp causing all of us respiratory problems. We’ve dealt with an earthquake, and we are battening the hatches for Hurricane Irene which is headed our way. I really expect to see locust next…..

Special Exposure Wednesday

My sweet Ashley trying to wake up after her MRI under anesthesia....

This and That

I so despise sitting in a hospital surgical waiting room. Worry hangs in the air like smoke from a camp fire on a cold, windless Winter night. No one smiles, but there is a lot of finger drumming, foot tapping, leg shaking, and wary eye darting. Everyone waits for the call that will make their heart breath a deep sigh of relief.

Ashley wasn't having surgery last Friday, but she was under anesthesia for an MRI of her three brain tumors. Anesthesia and kids with significant special needs, including breathing issues, do not a good mix make.

While I watched the hospital pastor approach one of the most anxious families, I knew from experience that the news wasn't going to be good. I've been there, and I just wanted to scream at the priest and tell him to go away, all the while wanting him to just pray as hard as he ever had in his life.

Today, my call came and it was good news. Ashley was in recovery and I could come hold her while she woke. The cloud of worry over my head dissolved as if it had been rained upon...

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Ronnie absolutely refuses to practice walking with his braces and crutches. About a year ago, he said he wanted to learn to walk. Although he didn't like to slow down his life to go to physical therapy, he was cooperative when he got there. He worked very hard, and was able to take a few difficult steps.

But now he has decided he does not want to walk.

I think it is because the learning is difficult, and even the result, should he learn to walk, would be more difficult than just wheeling himself around in a chair.

So, should I force him to keep going to therapy, knowing all the while he won't practice? Or should we stop? It could be viewed that he has accepted himself as a wheelchair user and he is comfortable with that versus someone who has to work very hard just to be a walker like most of the world.

I'm going to speak to the therapist, but I am leaning towards supporting his acceptance as a wheelchair user.

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Ashley always has been a picky eater. Actually, picky is too mild a word. She was fed through a G-tube for many years, but then became a proud graduate of the Children's Hospital Feeding Program. What that meant is that she would tolerate soft foods in her mouth. Her diet was made up of mac and cheese, mashed potatoes, pudding, applesauce, chicken nuggets, and Le Suer baby peas (HAD to be Le Suer).

Through the years, I have tried introducing new foods, and ever so slowly she has added to her menu plan. She now will eat raw spinach, scrambled eggs, chicken salad, tuna salad, and cupcakes. But she still has a long way to go.

For some unknown reason, there is one place she will always try new foods.

The kids and I often go to a restaurant named Positive Vibe Cafe. The Cafe was born from a marvelous idea (read it here), and the food is spectacular. Earlier this summer, she tried key lime pie there. And this past Saturday, Chip convinced her to try fried calamari. After placing a ring of squid on each finger, she then proceeded to gobble them down (the squid, not her fingers). The waitress was so excited that she asked the chef to make a few more for her!!

I wonder if the owner would rent out a room for us to live in??

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I found the storm trooper helmet hidden behind the toilet. Ronnie had been in the bathtub, so I wasn't surprised. But I couldn't find the storm trooper anywhere. I asked Ronnie after he had finished his bath and was in his room, and he just shrugged. But it was a slightly guilty shrug, and I soon found out why.

The storm trooper has decided to go for a ride down our toilet.

For the record, storm trooper do much better in space than in the sewer system...

More Alike Than Different

Love, love, love this video, and just had to share it with you...

The Worst Day

Today is the worst day so far this year...

Ashley and I will be at the hospital early this morning for her annual MRI under anesthesia. Ashley has three brain tumors. We've been watching them for four years now. At first, the MRIs were every six months. Then, because the doctor was seeing no change, we went to an annual schedule. And, if today's MRI continues to show no negative change in the tumors, I will have to make the decision whether or not I want to go to an 18 month schedule.

The MRIs are so very, very hard for Ashley and for me. She gets extremely anxious the minute we pull into the hospital parking lot. And then it goes downhill from there....I'm not going to go into the details because I don't want to think about them right now.

I just want it all to be over. I want to see Ashley's eyes open and a smile touch her lips. I want the tumors to have magically disappeared.

Your thoughts and prayers would be most welcome today...

Tears

The child’s father said that he took care of his son for many years and that he just started to look at him as no longer his son, but rather just an inanimate object.

The child was seven years old and had cerebral palsy as well as some other unspecified disabilities. He was fed through a G-tube and was unable to speak.

The child’s father took a hacksaw and decapitated his son and then purposely left his son’s head in a position that his wife would discover. Before the wife, who was out running errands, returned, a volunteer firefighter drove by and spotted the boy’s head by the side of a city street. When the police arrived, the child’s father was standing on the porch and told the police that it was just a crash test dummy and that he had done it as a joke. The police found the rest of the child’s body in a white trash bag nearby.

The boy’s name was Jori.

His father, in my humble opinion, should rot in hell.

I’m so sorry, Jori. I wish you could have been my little boy.

Louisiana Child Killing

Special Exposure Wednesday

My oregano plant started as a three inch little sprout. Now two years later, it is shrub size. It's taking over my garden way too much so I decided to just let it go to seed this year before I pull it up. The bees LOVE the flowers! When I asked Chip to pull it up for me, he said "No way!" I guess we will have to wait for cold weather when the bees head south for the Winter!

Signing in a Hearing World

When we were returning from our trip to Williamsburg this past Saturday, we decided to stop for lunch at the Candle Light Restaurant. It is an out-of-the-way little place that is frequented more by locals than tourists, and on previous trips we were impressed by the home-style quality of the food.

Although the building had been remodeled a bit (and made more accessible!), the owner and staff were the same as was the menu. A server came by and took our orders, and right after that another person stopped at our table and asked about our drinks. I mentioned that the server had taken the orders, but this person said she would get the drinks.

I noticed something in her speech, a quality to her voice that seemed both familiar and different at the same time. I couldn't quite put my finger on it. But the next time she stopped by our table, I figured it out!

She had apparently seen all of us signing to each other, so when she returned to the table, she also signed. She was Deaf or hard-of-hearing and the quality I heard in her voice was that of a person who leans to speak without fully being able to hear.

Ronnie was thrilled! He loves to come across people who sign, people with whom he can easily communicate. I love to see him get so excited, but it also is a bit sad.

That which most of us take for granted - the ability to converse with others - doesn't come easily to someone who is Deaf and lives in a hearing world. I wonder if it bothers him, or if he is just accustomed to it...???

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!!!

Yet Another Disrespectful Movie

I really hadn’t planned on going to see the new movie with Ryan Reynolds and Jason Bateman titled, “The Change-Up.” To me it looks like just another silly switching bodies type of movie and after Freaky Friday, I think I have had my fill of that. But there is another even bigger reason I won’t see it.

Just like the movie Tropic Thunder, The Change-Up attempts to get laughs at the expense of people with disabilities. In one exchange early in the movie, Reynolds’ character asks Bateman’s character about his young twins. “Why can’t they talk yet? Are they retarded or something?” he says. Reynolds follows up with, “the one on the left looks a little Downsy.”

The Special Olympics organization is calling for an apology from Universal Pictures. The ARC is calling for an apology, and the disability community is up in arms and expressing their distaste on blogs and social networking sites.

It is long past time for this disrespect to stop. Even if we all boycott the movie, it probably won’t be noticed because it is generally a stinker of a movie. But, if you have a way to express your outrage – if you are offended – if you want movie executives to stop trying to get laughs at the expense of those we love, I urge you to let your opinion be heard.

Just a Thought

I know that there are people who will read this post and immediately start googling the location of the closest psych ward for me. But, trust me, I’m not ‘doing’ anything yet – I’m just sharing thoughts.

Now that I have a spare bedroom (Corey has left home and joined the Army), my thoughts immediately went to the subject of adoption. It seems a shame to have an empty bedroom when so many kids wait for a bedroom and a family to call their own.

**This is where some of you may start your Google searches**

I have not made a decision to adopt another child, but I must confess that I have visited the adoptuskids website. However, the type of child I would want to adopt (if I had made a decision to adopt again and I haven’t) is not the type that is featured on that website. I would want a child that is either currently in an institution or is headed to an institution.

It truly breaks my heart to just think for a minute about a child growing up in a room with a number on the outside. It breaks my heart to think of such a child not getting tucked in and a kiss goodnight every day. It breaks my heart that such a child may never hear the words “I love you” and have them ring true.

Children need siblings, not other ‘residents’. They need family dinners even if they are fed through a tube. They need holidays with loved ones not holidays spent with the ‘alternate’ staff. They need a dog or a cat and to raise butterflies at least once in their life. They need to sit on a blanket under a tree in the back yard looking up at the cloud shapes. They need sticky hands from popsicles eaten on a summer evening, all the while watching the blinking of lightning bugs. They need to wake up in the morning to the same face that they saw when they went to sleep the night before. They need vacations spent at the shore every year. They need Christmas presents under a tree that has a family’s history of ornaments dangling from it.

They need a family.

I’m not intimidated by complex medical needs. I have learned to navigate the health system in my area, and we have one of the best teaching hospitals in the US here. I have connections and family supports. I understand the insurance system and how to make it work for my children. I have a good job that allows me adequate time off, and I have the supports in place for my children when I am working. But I also have this nagging little whisper in my head that keeps talking about adoption of a medically involved child.

Will I answer that whisper? Not today. But maybe in the future….

Special Exposure Wednesday

The lack of rain is really catching up with us here in Virginia. We have voluntary water restrictions, and the plants and lawns are looking really bad. I've really enjoyed summer, but now I'm ready for autumn...



Great picture of my dying flowers, Chip!

Disappointed

I checked Facebook Sunday night just before going to bed and was surprised to see a status update for one of our local news stations. It said something to the effect of “join us tonight at 11pm to hear about what Virginia should do to the developmentally disabled in the state.”

Whoa!!! That got my attention, and I was determined to stay awake until 11pm to hear what was said. Unfortunately, tiredness took over and I didn’t make the broadcast.

So, when I got up very early Monday morning, I checked Facebook again, and sure enough there was another update from that news station that said “We ran a story tonight on what Virginia should do to the developmentally disabled. State officials are collecting public comments on this issue through August 15th. Comments can be submitted by e-mail to…”

The more I thought about how that was worded, and the more I worried about the content, the angrier I got. So the first thing I did after getting ready for work and getting the kids moving was to check the actual website for the news station to find out what Virginia was going to “do” to the developmentally disabled.

Apparently, other people had issues with the words and by the time I got to the station and back to Facebook, the wording had been changed. All reference to “do to the developmentally disabled’ had been changed to “care for the developmentally disabled.” The content of the story referenced a survey being conducted by one of the state agencies that support people with disabilities.

I’m really disappointed that the news station (WTVR) made such egregious statements even though they were corrected later. This is a station that advertises itself as the most honored station in Central Virginia. Perhaps they are, but these comments were dishonorable at best.

A Reason To Celebrate

Back in May, I shared the good news that this year would be the last year the Jerry Lewis would host his annual pity party on Labor Day weekend, better known as the MDA Telethon.

Those of you who have been long time readers of my blog know how I feel about Mr. Lewis and his attitude and beliefs about people with disabilities.

Well, now the news is even better! Jerry Lewis is OUT completely! The MDA announced at the end of last week that Jerry Lewis would not be returning this year or any time in the future. No reason was given for this decision, but I like to hope that the voices of people with disabilities helped make this decision.

To check out my past writing on this subject, you can check here and here, and as I said before, good bye and good riddance, Mr. Lewis.

In The Heat of the Night

and the morning, and the afternoon and the evening....

Being a homeowner can sometimes be a complicated job. I often have questions like, "How do you know when your roof needs replacing?" and "How old is too old for a heat pump?" I hesitate to ask those questions of the actual companies that provide such services because I wonder if they are being honest or just trying to sell their products and services.

My current heat pump is 12 years old. I do know that the average replacement age for heat pumps in 10-12 years, so I guess we are living on borrowed time. And that fact reared its ugly head yesterday afternoon when my air conditioner failed.

By midnight the temperature in the house was about 82 degrees, and it continued to climb through the next morning and afternoon. I don't handle the heat well, and Ashley handles it even worse. Extremes in temperature can cause seizures for her.

As soon as I thought the office of my favorite HVAC company opened, I called them. I had heard horror stories from others in my area about having to wait a week for heat pump repairs, and I was panicking. But Amy, the person who answered the phone asked if I would like someone to come by today.

Yes, Amy, that's a great big YES!

Since my house is over 60 years old, Amy and her co-workers and I are on a first name basis. Their company, American Service, is one of those rare companies that still believes in customer service, and most especially, will go out of their way to help a customer with exceptional circumstances - a child with seizures, for example.

Clark, the owner, and others techicians, have spent Christmas day with me in the past, have come on short notice, have helped fight the homebuyers insurance company I used to have, and even performed service pro bono for me when times were tough.

Clark showed up today about 4 hours after I initially called. He had the AC back on within about 45 minutes, and recommended that I start planning to replace the system within the next year or so. No hard sales pitch - no dire warnings - just advice. And I trust him. So I will be saving my pennies in the hopes of replacing this system early next year. But in the meantime, we are all blissfully cool tonight.

Thank you Clark!

Singing The No-Video-Game Blues

Having three sons means that I have had my fair share of video game obsession "issues." Chip and Corey, the two oldest, have finally come to terms with my feelings on the subject, but Ronnie is still learning.

Ronnie earns video game time by completing daily chores. The chores are not difficult, but they are things he must remember and complete without being told. Included are brushing teeth at least twice a day, remembering to take medicine (which is already portioned out into a schedule box for him), doing his laundry at least once a week, cleaning his room at least once a week, and loading and starting the dishwasher after dinner each night. Performing those chores without being told is what gets him video game time. He has said repeatedly that he understands that.

His average earned time is about 14 hours a week. That sounds like a lot to me, but as long as he is getting the chores done and doing schoolwork, I can live with it. His time resets weekly because he keeps a weekly chart of chores completed. So, on Sunday he is looking at a balance of 14 hours of video game time.

Unfortunately, he has not learned or chooses not to budget that time across the week.

This past Sunday, when he played for three hours straight, I reminded him that he only had 14 hours for the week. He said he understood. As I noticed the banked hours diminishing rapidly early on in the week, I reminded him again. Again, he said he understood.

So here we are at Wednesday evening and his video game account is empty. And he is whiny and angry. I talked to him about the budgeting again, and reminded him that he said he understood. He just signed "whatever" and went into his room to pout. And being frustrated about no video game time spills over into other parts of the day, and he basically turns into Mr. Cranky Pants.

I'm sure he will learn to budget his video game time eventually, and we do need to work on the cranky pants attitude, but I'm just going to consider this all part of his homeschooling efforts for the summer!

Special Exposure Wednesday

This is Ronnie's I DON'T WANT ANYMORE PICTURES TAKEN! face...

A Change For The Worse

Yesterday was the first day of the second summer school session in my school district. The first session lasts four weeks and the second session last three weeks. I have no idea why it is broken into two sessions.

I have no idea if Ashley has the same teacher and the same aide for the second session. Of course, I have no idea if she even has an aide. I’ve never gotten a report from or about that person.

I have no idea what Ashley did in the first four weeks and I have no idea what the plans are for the last three weeks of summer school. I’ve gotten no reports other than a vague, “Ashley is doing well” from the first teacher. I wonder what she is doing well at?

I have no idea if Ashley is eating her lunch at school other than the fact that her lunchbox comes home empty each day.

I have no idea if sunscreen is being used when Ashley is outside other than the fact that she hasn’t come home sunburned. But I guess that could mean that she hasn’t actually been outside.

I have no idea if Ashley has had one seizure, 10 seizures, or more at school. I’ve not heard from the nurse (if there is a nurse) or the teacher other than the time I was requested to fill out a “seizure plan”. I guess I should have noted on the form that I would like to know if a seizure occurred.

I have no idea if Ashley interacts with the other students at summer school, if anyone facilitates communication between Ashley and the hearing students or if she uses her cane.

What I do know is that Ashley has come home several times with injuries, some bordering on significant. I know she has come home with a torn pull-up and wet clothes, even though I always pack a change of clothes and extra pull-ups. I know that she doesn’t seem thrilled with the prospect of going to summer school, but during the regular school year, she loved going to school. I know that the only progress on her communication skills have been the things I have worked on with her over the summer. And I wonder if I will get an updated progress report on her IEP at the end of summer school.

To say that I am not thrilled with the services Ashley is receiving this summer is an understatement. I know that there has been a change in administration as it relates to summer school services, so maybe that is the reason. But, you can bet I will make sure next summer’s IEP is very, very specific about what I expect.

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!