Tuesday, October 7, 2014

Hello Dolly!

Dollywood


Every October, we try to take a weekend trip – our Halloween trip – somewhere Halloween themed of course. Usually we go to Salem, MA. Two years ago, just to take a break from Salem (there is never really a break from Salem as we tend to end up there quite often during the year), we decided to try Sleepy Hollow, NY. It was fun. It was no Salem, but DC had his best friend BB, along so he had an exceptional time. Last year, we opted for NY ComicCon and a weekend in NY – DC’s favorite place. ComicCon – Costumes, Characters – close enough to qualify as our Halloween weekend away. Last year, I also discovered a festival in Kansas called, you guessed it – The OZ Fest. The OZ fest is held in late September, not October, but still close enough to count. The OZ fest was the plan for this year’s Halloween get-away. That WAS the plan….. until we calculated the cost of the flights, rental car and hotel for the weekend and realized that it was almost equivalent to booking a cruise for a week.

Plan discarded…………… (for now)

But now I had OZ on the brain and I was not going to give up the notion of getting DC to OZ. I remembered seeing photos that my sister-in-law posted from an OZ event that they had attended a few years back. It was at  Beech Mountain, North Carolina. I facebooked her to get more details. She told me that this event was very popular, but only open for ONE  weekend each year; this year on October  4 and 5. Tickets had to be purchased in advance, and I was told that it sold out very quickly.

We went about booking flights, but then the tickets did not go on sale on the day they were scheduled to, and not on the following date that was posted. We had flights but had no idea if we would be able to get tickets. Finally we just happened to go to the site to check for a new sale date, and there they were, on sale, unannounced. Tickets – purchased; we were good to go.

Doug, who loves to research everything to death, came to me after all of the plans were made……

“Um…. is there some sort of pill you could get for this trip?”

- That is never a good sign

“Why, what happened?”

“Well, you realize that this place is on top of a mountain, and we have to take a bus to the top.”

-Now Doug has had to deal with me in a car driving up to Mt. Haleakala -
  • I was convinced I could not breathe (I could)
  • Potato chip bags exploded in the back seat from the pressure, scaring the life out of me
  • The gas alarm began to chime because we were headed straight up and I was convinced we would run out of gas, further scaring the life out of me (we didn’t)
  •  I yelled at him all the way to the top (and all the way down)
……and many other winding, hilly, mountainous drives that went just about the same way. Then there is the whole “car tipping over on the curves” fear.

Let’s just say, I am not the best when I can see the edge of the road and a very long drop. Let’s just say that.

“I really didn’t need to know that right now. Thank you”

At this point I was thinking that this just may have been a big mistake on my part but I wanted to get DC to OZ so we went ahead with the plans. We were also planning to meet up with my brother and his family from Tennessee,  while there, so that would be fun too. They were to join us in OZ and DC was very excited about that.

The plan…. to fly down on Friday morning, head straight to Dollywood, back to the hotel and Saturday morning head straight for the mountain. The entire week before, the forecast was calling for rain, lots of rain, on Friday – Saturday was still looking good, with the exception of  the “dress for winter” e-mail from the “mountain”, but sunny and no rain. We kept hoping that Friday’s forecast would change, but it never did.

We arrived in Charlotte at 8:00 am Friday morning to sunshine, but it was short-lived. It would be a 4 hour drive straight to Dollywood or a 2 hour drive to our hotel. The original plan was to head straight to Dollywood, but now it was pouring so we really did not know what we were going to do.

We stopped for ‘second breakfast’ because DC had his breakfast at 3:00am at home. He was actually looking for lunch at 8am. I tried to explain to him that we woke up much earlier than usual and it was not lunchtime, he would just be getting to work if we were at home. I knew he really did not understand this. He had breakfast at home so surely it must be lunchtime, because that is what comes next… period.

We checked on-line for other things to do in the area, but most were outdoor activities, so we decided we would just head in the direction of our hotel and Dollywood. If it was still pouring when we reached the hotel – maybe they would let up check in early. If the weather changed, we could just continue on to Dollywood. Checking the forecast, the weather was actually looking worse; now predicting thunderstorms.

The hotel did let us check in early and I was really looking forward to a quick nap (more about that later), but we decided to call just to see if Dollywood was open.  They were, so we decided to risk it and drive 2 more hours to get there. If the weather didn’t change we could always just try to find a bookstore and DC would be happy to just go back to the room with more books – and I would be able to take a nap.

storm dollywood
We drove the 2 hours to Dollywood –  pouring almost all of the way. The forecast still reading heavy rain and thunderstorms, but…. the closer we got the lighter the rain, until it had completely stopped. When we pulled into Dollywood,  the clouds parted and the sun came out – full force – seriously, it was hot! We were not dressed for HOT, but whatever – it was amazing. While the forecast was still reading heavy rain and thunderstorms, we were in the blazing hot sun!

After only a few minutes, the clouds rolled in, but not like earlier, just enough to cool it down. It was perfect. I think the weather actually worked in our favor.
oz 081
The park was not crowded at all. There were no lines for any of the rides. DC was able to ride on most of the roller coasters, before Doug began looking a little green. There were only 3 hours left of park time by the time we arrived, but it was plenty of time – everything moved very quickly.
oz 087
The Front Row
The Front Row
oz 085





We even had time for the carousel, train and the world famous’cinnamon bread’.
oz 090
oz 092

Meltdowns?

Just one…..

…….and it was me.


  • I do not like 6:00 am flights.
  • A 6:00 am flight means we have to leave our house at 4:00 am – which means we have to wake up at 2:30 am.
  • Having to wake up at 2:30 means I really will not be able to sleep at all because I am worried that I won’t hear the alarm or just won’t wake up in time.
  • I was lucky if I got 45 minutes of sleep.
  • I can not sleep on a plane – ever. I try, but I just can’t, never could.

This means that when we arrived in North Carolina at 8:00 am Friday,  I had already been awake since 5:30 am Thursday morning – about 27 hours for those of you that don’t want to do the math.

 By the time we left Dollywood and started back to have dinner and find a bookstore, it was somewhere around 37/38 hours without sleep. I just could not take it any more. It was a meltdown of epic proportions.


So………….


We had dinner, skipped the bookstore and got back to the hotel all before 9pm. I got some very much needed sleep. I think I was “out” in all of 5 minutes – that never happens, no matter how tired I am – and I slept straight through the night, which also never happens.

The next morning was sunny, but cold and I felt much better after getting some sleep….

(No worries, DC made it to a bookstore on Saturday)

Next we were heading off to see the Wizard…………


(to be continued in next weeks post;  “Because, Because, Because, Because….BEEEE CAUSE” )

Monday, September 29, 2014

Guest Post: Raising Awareness in the Face of Tragedy - #NeverWillForgetYou - By Gizelle Tolbert

Rocopera is the uncle of Avonte Oquendo, the nonverbal severely autistic teenager, who went missing in Long Island City, New York last year. 

Not only did Mr. Rocopera lose his nephew due to wandering from NYC school but also lost his wife due to a painful and long battle with Leukemia.  He spent countless hours taking her back and forth to doctor’s appointments and various therapies. She was on the donor list waiting to receive a lung transplant.  Despite his effort and dedication, while trying to provide for his family and raising their Autistic son; she unfortunately succumbed to her illness.

 Mr. Rocopera wrote and produced a very moving and passionate tribute called “Never Will Forget You” which is a heartfelt song that recreates the moments prior to Avonte’s disappearance up to the last moment he saw him alive and the passing of his lovely wife for whom he loved in sickness and health, until death she parted.

This song is dedicated in their loving memory and the proceeds from this song will be donated to credible charities. The song “Never Will Forget You” will be released prior to October 4th; which will be the one year anniversary of the disappearance of Avonte.


A documentary about Avonte’s disappearance is another project in production. Please help us spread the word about both of these projects, produced in loving memory of Avonte and all of those lost to wandering or tragedy.



The song and video will be available for free download only on October 4, 2014, the one year anniversary of Avonte's disappearance. 

(Google: free download Rocopera #NeverWillForgetYou 10.4.14)

Also: Sneak preview of the mini movie tribute to  will be Friday, October 4, at  12:00 am (Midnight) on YouTube 




By Gizelle Tolbert

Related Posts:

Sunday, September 28, 2014

Disney, Disney and more Disney

Many of you know that DC has a complete, over the top, obsession with all things Disney. This obsession began when he was probably 6 months old. He loved to watch those Disney Sing-A-Long videos, over and over again.

DC did not take naps as a baby. He did not like the playpen, he liked the bouncing chair but was over it after a few days. The swing, lasted a little bit more than a few days, but he was quite over that after a week or two. He did not like to play with toys. He was not happy unless he was being carried around. These sing-a-long tapes were the only thing that captured his attention. So yes, I used them because for 30 minutes, I was free to do something else.

He graduated quickly to full length movies. The "Jungle Book" was the first full length movie he owned. I was a bit surprised that he was able to pay complete attention for the entire length of a 90 minute movie at 9 months old.

His obsession with Disney grew from there, especially for Cinderella. The boy loved his princesses! It got to the point that this “one movie” or “one Sing-a-long” a day was interfering with everything else we needed to go. He was so preoccupied with watching a movie that he did not want to do anything else. I didn't want to take his movies away from him – he loved them, but I had to try to limit his movie watching to weekends only. This did not go over well at all.

I remember one night, he was probably  4 years old,  DC wanted to watch a Disney movie, I told him he could not. Now, at the time he was non-verbal, afraid of the dark and would never think to go anywhere without me. Communication was rough, he was still having meltdowns and really had a hard time understanding many things – but on this night, when I told him he could not watch a movie, he took his video put it under his arm, marched to the front door and signed “Dad”. He was determined to go to Dad’s house because apparently he would allow him to watch his movie.

DC had officially learned how to play the “Guilt Card”. Obviously he was not going to go outside in the dark, but he did make me feel awful and as always, like the bad guy. No, he did not get to watch his movie, but I realized then that he understood much more than I had been giving him credit for.

Cinderella led to his fixation with flowing dresses and shiny shoes. Out in public, he would grab at strangers  wearing  'flowy' dresses or skirts. He would also get on all fours to stare at their shiny shoes. This was not always welcomed by the people wearing the "Cinderella-like" garb. I had to always be aware of everyone around us at all times and what they may be wearing to avoid an uncomfortable situation.

Around this time, I had a long 'flowy' gauze type skirt. It was hand washable of course. I always had to be careful about drying it. We lived on the second floor and I was  afraid that if I were to hang it to dry on the clothes line,  DC would try to go out there to play with it - yes, among the other worries and issues these were the other things I had to think about. So I used to hang it on a hanger from the shower head and close the shower curtain, so he would not see it. One night,  in the middle of the night, I woke to giggles, and some thrashing about. I went into the bathroom to find DC in the bathtub playing with the hanging shirt. I got rid of the skirt not long after.

There was ONE Disney book in his classroom when he was in  his “in-between birth to 3 and Kindergarten” SPED classroom, it was the Little Mermaid. His teacher hid this book on a daily basis, because he could not concentrate on anything else knowing the book was in the classroom. Everyday he found it. She went to great lengths in hiding it – finally hiding it in a storage closet where DC had never once stepped inside – but as always he found it. It was almost as if he could sense it.

It took awhile but we finally had the movies in check and he did get past searching for that book. I didn’t want to take Disney away from him altogether, I wanted him to learn to live with Disney but not be overtaken by it. When he seemed to be in that place, it was decided it would be safe to take him to Disney World without him regressing back into his Disney-Obsessed behavior.

I know, I know, you are thinking “Why would you do that”? and again I will say that I didn't want to take away something he loved so much, I just wanted him to be able to function around it.

His first trip to Disney World was when he was 7 years old and it was there that his first words (other than “Momma) were spoken:

Bus (because he knew the bus would be taking us to one of the parks each day)

Room (because we all know how much DC loves a hotel room, even back then)

‘Citronelle’ (DC-Speak for Cinderella)

‘Too-pay’ (DC-Speak for Peter Pan)

‘Dal-may-zaas’ (DC-Speak for Dalmatians)

For a boy who’s only word up until this point was “Momma” – I thought ‘Dal-may-zaas’ was quite amazing.

After a very long hunt, he was able to find and meet ‘Citronelle’ for the very first time. He would go on to meet ‘Citronelle’, many other times over the years and it is still very exciting for him, but nothing will ever compare to their first meeting – ever.

citronelle

Moving on to grammar school, we thought the Disney book distraction was behind him. Just to play it safe, his new teachers removed Disney of any kind from the classroom before the school year began. We thought we had this covered, but little did I know, there was an entire Library in this school, just full of Disney books. Realizing very quickly that this was becoming a problem, they were removed as well (for the first few months he was there, anyway, then they slowly came back so he was not overwhelmed with a large number of books all at once).

Now that he was becoming more and more verbal, he began reciting random movie lines. The lines he recited did not always have anything to do with what was going on at the time (they still don’t), they were just what might have been spinning around in his head at the time. Some were recognizable right away, others were obscure lines that really many people would not know.
While dropping him off at Daycare one morning before school, he bowed to me and said "Thank you Lucifer". Now I know that Lucifer is Cinderella's cat, but really, how many other people could make that connection? Fortunately the Daycare staff, got it but I still felt it necessary to e-mail his teacher just in case, to let him know that, no, we were not worshiping Satan at home.
(and yes, that e-mail made his day)
While walking through the grocery store "Please don't send me away, I like it here!" (Disney's "Summer Magic" - there are very few people who even know of that movie, never mind that particular line).
Now that he is older, he has more of a handle on his obsession. He is not so distracted by Disney that he can’t or won’t do anything else. Still he is limited to movies only on weekends. He will spout the random movie line. He still loves his princesses.

And if you are wearing a ‘flowy’ dress, he will to ask you to spin………. (most people oblige)







Monday, September 22, 2014

Guest Post: Spreading Awareness; Spreading the Word; #NeverWillForgetYou - by Gizelle Tolbert

Guest Post by: Gizelle Tolbert

I would like to take this opportunity to introduce you to a very talented actor and gifted songwriter Rocopera, who is the common law uncle to Avonte Oquendo, the nonverbal severely autistic teenager, who went missing in Long Island City, New York last year. 

Mr. Rocopera wrote and produced a very moving and passionate tribute song and video called “Never Will Forget You” which is a heartfelt memoir that recreates the moments prior to Avonte’s disappearance up to the last moment he saw him alive.  

This song is dedicated in his loving memory and the proceeds from this song will be donated to credible charities. The song “Never Will Forget You” will be released on iTunes 5 days prior to Saturday, October 4th. 

The song and video will be available for free download only on October 4, 2014, the one year anniversary of Avonte's disappearance. 

(Google: free download Rocopera #NeverWillForgetYou 10.4.14)

We are requesting that you talk about or write about this beautiful song.  For not only will the song leave an ever lasting impression on you and your friends and/or readers who also may have also lost loves ones due to tragedy but will also have a major impact on the Autism Community; which Rocopera knows so very well because his son Javan, Avonte’s cousin, is also autistic.   

We would like to thank you for assisting in spreading the word about the song and spreading it's loving message. Thank you for helping to spread awareness about the tragedy so that what happened to Avonte and many others due to wandering will not be in vain. It’s very important we continue to raise Awareness about Autism which is affecting 1 out of 68 of our lovely children. It is the fastest growing serious developmental disability in the U.S.  

If you feel as though you would like to help us spread the word by contacting local or national news organizations, radio or print outlets, please contact me at gtolbert102@yahoo.com for additional information, press releases or flyers.

Thank you for your consideration of this special request.

Please also visit Rocopera's twitter page:

 #NeverWillForgetYou @RocoperaLive
A place where anyone that has lost a loved one can share photos, 
stories and memories about that person or persons.  

Thank you,
Gizelle Tolbert



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ATTENTION NYC PARENTS : Avonte's Law - Rally JUNE 12, 2014!


No Storm Today?

No Storm today
“No Storm today?” – may always be put forth in question form, but let me assure you, it is not a question. There is no reply that DC will accept. If I know for certain that there will not be a storm coming, I will tell him that. If there is a storm in the forecast, I will tell him that as well. The latter definitely does not make my day easier, but I do not want to lie to him. Either way, whatever the response; when he has it in his head, due to a cloud or a noise, that a storm is on the way, he will ask the “question” over and over again. It’s worse when the answer is “yes”, but it doesn’t stop just because I’ve answered “no”.

There was a time, when a storm was not even a passing thought to DC. For a child that really didn’t like loud noises, thunder did not seem to bother him at all. Rain, lightning, wind – he didn’t even seem to notice.

Then, one night about 10 years ago (it could be more, it could be less – I seem to have no sense of time anymore) the power went out in the middle of the night during a storm. It went out for all of 1 minute, but that was all it took.

DC sleeps with the lights on, always. He does not like the dark. Now, I am told that at his Dad’s house he does  sleep in the dark with only a night-light. This really does not surprise me, he has his rituals and his way of doing things, but he seems to have different rituals according to where he is at the time.

He will not sleep with the lights off at home. When he was younger, he would get up in the middle of the night, come to my room, turn my lights on and go back to bed. Because of that, I now also sleep with the lights on as well. It really doesn’t bother me, I’m not a fan of the dark either. Turning on every light is his first order of business as soon as he wakes up or walks in the door. Asleep or awake, he knows as soon as a light has been turned off, even when he is not in that room.

After the one minute power outage that night, he has been preoccupied and terrified of storms. It is not the storm that terrifies him, it is the threat of loosing power.

He has made a little bit of progress over the last few years and he has also changed his routine a bit. The constant “no storm today?”  has been replaced with running to the door every 5 minutes and telling me how brave he is being, over and over. He will also immediately get his pajamas on (no matter what time it is), get his pillow, blankets, iPhone or laptop and get “into storm position” on the couch.  That is where he stays (which means I have to sleep on the other end of the couch, because of course he won’t be sleeping downstairs alone). Once he gets involved in whatever he is watching on his laptop, he tends to calm down a bit – the “calming down” part is new. So there is that little bit of progress.

As always, with progress comes new issues. I am no longer allowed to watch the weather. I am no longer allowed to watch the news, because part of the news is the weather.

“No WeaVer” (Dc-speak)

Last week, DC noticed that it is not as light out in the morning than it had been. I really didn’t notice until he began a morning ritual of running to the door, looking for clouds. I explained to him that it was because the sun hadn’t come up yet. It would be light soon. One morning, it was a little bit cloudy when the “sun” did come up. It really wasn’t very cloudy at all, just a little bit. He launched into his routine. I explained to him that I didn’t think it was going to rain, but I could check the weather to be sure.

“NO Wea-Ver!!”

It  really was not cloudy enough for it to be bothering him so much. His transportation arrived, he ran out to the driveway as he always does, while I watched from the door. He stopped at the car, turned and began running back and forth up and down the sidewalk. I went out, tried to calm him down. The driver told him he’d be safe in the car. After a few more outbursts, he finally got in to the car, but he was not happy about it.

- Did I say – “progress”? -

 Two steps forward, one back.

A week later, a week of beautiful weather, we decided on Friday night that we would take DC to New York City (his favorite place) on Saturday. The weather had been so wonderful the past few days that it did not occur to me to check the forecast before I told him. When it did finally occur to me to check, the forecast was for “showers in the am. and steady rain in the afternoon”. We told DC about the rain – it didn’t seem to faze him, but of course, he is just thinking about going to NY, not how miserable would be walking around in the rain. Finally after talking to him about it for quite awhile, he decided – with help – that we would go the following week. Even though he talked himself out of going he was very angry with me about the rain, because of course rain is always my fault. I really do not think he understands that I do not control the weather.

The problem with telling him that we would go the following week is that he needs to know when, he needs a specific date. He needs to write it on the calendar, to point at and remind me 5, 6, 7, 10 times every day. Choosing a date an entire week away would be putting ourselves in the same position – we won’t know what the weather would be like, but we chose the following Sunday. Once something is written on the calendar, there is no turning back.

The following day, just to take the “No NY trip” sting away, we took a more local day trip. It was cloudy (cloudier than the morning of his almost-meltdown last week at the car), but DC didn’t seem to mind.  We had “second breakfast”, went to a toy store, bookstore, had lunch and visited another bookstore, all in the same area so we would be close to the car if it started to rain. It didn’t. He had a great time.

With the “distraction day trip” over,  he immediately moved on to pointing at the calendar to remind me about New York City on Sunday.

“We going to New York City on Sunday. DC, and Mom and Doug” – (he must list the participants –  always)

“We going to the 10th Kingdom on Sunday – please!”

On Friday the forecast for Sunday in New York called for 80’s, windy and only a 12% chance of rain. DC spent Saturday night at his Dad’s.  I woke up on Sunday morning to rain! This does not necessarily mean is would be raining in NY, but the weather there is usually pretty close to ours. I thought he would come home in the morning all out of sorts about the rain, but his Dad said he was very excited and told him he was going to NY “at least 100 times”. The rain did not seem to faze him at all.

I have always said that if given the choice between Disney (his other obsession, we’ll talk about that one day) and New York City, he would surely have to think about it. It also seems that his fear of storms, rain, clouds, thunder and lightning is only a fear when New York City is not in the mix.

Dc at the plaza
Timessquare


Monday, September 15, 2014

#StopDropAnd.... (just for fun)

(photo credit - Instagram)
(photo credit – Instagram)
Last week I received an invitation to participate in a pod-cast. I won’t mention the name here as I didn’t ask for permission to write about it, but the overview given to me was:
I want to provide fierce women like me soul food, share
stories, exchange the good, the bad and the ugly and create an
environment where we discuss the hard stuff.
Immediately, I felt sick to me stomach.
My reply:
Thank you so much for the offer. Although I would LOVE the free publicity,
I am not a public speaker, when I say “not a public speaker”, I mean to the
point where I can’t talk at all, my mind goes blank, and if anything does come out
– it does not make any sense. I am much better, and tend to stay behind the
scenes. But thank you for the offer
Coincidentally I had just finished reading a #StopDropAnd…. type challenge that one of my Instagram friends posted about herself, called “20 things about me”. Many of the items she listed rang so familiar with me and very well could have been written about me. I was thinking about my own list, and the public speaking phobia was definitely one of the “about me’s” I would have listed. It was odd that I had just been thinking about this subject, due to an instagram post, when the e-mail came in.
This little coincidence led me to think about all of the #StopDropAnd tags I’ve received – seriously, if you haven’t figured it out yet, there is no rhyme or reason to the way my mind works, or how one thought leads to the other, so just go with it………………
In the event you are not familiar with the #StopDropand hashtag/game, it works this way:
You are tagged in a friend’s photo to #StopDropAnd do something.
Just for fun and because I have three different posts that aren’t going to be finished today, I am supplying a sample of some of the #StopDropand ‘s that I have been tagged for:
#StopDropAndSelfie – there is nothing more frightening to me than having that camera turned around on myself. I have done it accidentally a few times and seriously…. I don’t need to see that, no one does.
The following is my collection of #StopDropAndSelfie (s) – and no, I did not follow “the rules”.
One friend that I tagged was reprimanded by his daughter. Unbeknownst to him (or me), there are apparently rules that govern selfies that he was not following:

You do not take selfies at night
Find your best facial side and make that side the main side
Girls tilt head 45 degrees and up, Guys straight on and up
Hold camera in front of you and up to the right (or left, if that is your best side)
Don’t put weird or distracting objects behind you
Make sure there’s good lighting in front of you
Don’t over do the filters


 but…… she helped him out anyway. We learn something new everyday.
#StopDropAndConfess -
PB, DB. CF
My confessions:
1. I have a serious peanut butter addiction
2. David Boreanaz is the handsomest man alive
3. I also have a serious thing for Colin Ferguson
One friend that I tagged had an issue with the peanut butter jars being upside-down and others right-side-up, complete with hash tag #TheyAreComingToTakeMeAway  – that may very well be one of his confessions .
There is a perfectly logical explanation: Upside-down are unopened – stored that way so that the oil mixes. The others have been opened. Why is there more than one jar open??? You will have to talk to DC about that. There always seems to be more than one of everything open in this house – he just can not use the end of anything…..
#List10ThingsThatMakeYouHappy
10happy
1 DC’s “Good Morning, Mom”
2 DC’s smile
3.DC’s hugs
4. Doug
5. Coffee, Coffee, Coffee
6. My friends –  they are the best!
7. Some of my family
8. A day off
9. Meeting DC for lunch at his job
10. Of course, my IG friends

ig friends
IG Post from June 2014

Friday, September 12, 2014

The Same Boat????



Whatever your thoughts or feelings may be about Autism, let's remember that there are so many different levels of functionality.

While we may all be part of the same fleet, there are many different boats.

We all have different thoughts and feelings and we should be allowed to feel the way we feel.

There are many debates going on over many issues of late, but bashing parents that are simply worried about their children - not cool!