Hello Dolly!

Posted by TakingItAStepAtATime

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 us 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.

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.

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.

The Front Row

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

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” )

Disney, Disney and more Disney………………..

Posted by TakingItAStepAtATime

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.

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. He will almost always assign anyone he meets a princess or Disney character name.

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

No Storm Today?

Posted by TakingItAStepAtATime

“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 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.

I am very brave

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.

#StopDropAnd……… (just for fun)

Posted by TakingItAStepAtATime

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

(not very ‘fierce’ at all)

Coincidently, 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”.

: Self explainatory

: also self explainatory

: “technically” not a selfie – DC took this of me and it was on my phone

: Also not a new selfie, already on my phone

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 –

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

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 Post from June 2014

But does he know……

Posted by TakingItAStepAtATime

I’ve been asked quite a few times – twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong. I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time. Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him? – Yes.

But does he ‘know’?

I may never know for sure….

Re-Blog from Wendy Jane’s Soul Shake – Never Will Forget You….

Posted by TakingItAStepAtATime

Wendy is a friend and fellow blogger from my hometown. Although neither of us lives there anymore, it is our roots, it is still “home”.

Wendy was kind enough to re-post a piece I wrote a few weeks back “Never Will Forget You – A Tribute to Avonte Oquendo”.

Wendy does not write about autism, her followers are very likely not all Autism Moms, Dads or families as are many of mine are. To share her tagline:

One white woman’s curious obsession with race.

Follow my quest to connect across color lines.

The piece she has posted today does include an additional paragraph for those that may not be aware of the story.

(Wendy also does not have a re-blog button on her blog, so I have to re-blog it this way 🙂

After you read Wendy’s re-post, please take some time to read some of her other posts. As I said, she does not write about autism, but we really are allowed to read non-Autism related stories and blogs once in a while, aren’t we? I really think you will enjoy her blogs. I always do!

So thank you very much Wendy and now I am under immense pressure to live up to the introduction you wrote for me………..

Re-Posting Tribute to Avonte Oquendo, by Vickie – Via Wendy Jane’s Soul Shake

A friend, Vickie, is a stupendous supporter of WJSS, and by that I mean she retweets every single one of my blog posts, and actually reads them, and comments, and I truly appreciate her for doing so. Vickie, from my hometown, has a fantastic blog of her own, Taking It A Step At A Time, where she writes about her adventures, and challenges of being a mom to her 23 year-old son, D.C. who has autism.

On her blog, Vickie shares personal stories of what it’s like living day-to-day with a child with autism, and while there are many challenges that parents with children without autism never have to think about, what shines through Vickie’s stories, are the sheer joy D.C. experiences each day, much of which is driven by Vickie’s love and devotion to him.

Please Continue Reading

Secrets, Surprises, a Little Bit of Faith and Pizza…………

Posted by TakingItAStepAtATime

This past February all of the Winter Guard parents were asked to contribute a short story or memory about our Winter Guard Director. She would be celebrating her “-Mumble, mumble -th” Birthday in March. Her son wanted to put together a book of memories for her.

DC has been a participant with this special needs Winter Guard team for 6 or 7 years. He really loves it, even though at first he had a really tough time focusing and rarely did anything close to the moves that everyone else was doing. He didn’t care. He wanted to wave his flag. He has improved very much over the years and still enjoys participating. He loves the performances most of all. He loves the attention – he loves the applause. He is the only one to take a bow while the rest of the team is in the “end of performance” pose. (I am sure there is a proper and official name for that, but “end of performance pose” is the best I can do)

I wrote up my memory, DC drew a picture and we sent it along to the director’s son. Had I been really thinking, I would not have told DC about the birthday. It was still 3 weeks away and DC is always very excited about birthdays. DC also does not understand “surprise” or “secret”.

A secret, is DC whispering in a raspy voice louder than his already very loud voice.

A secret is pizza for breakfast.

There are times, not often, but there are times, when we have left-over pizza in the house. When there is left over pizza, DC loves to have it for breakfast. This happens all of once every couple of months, but I know my son. If anyone were to ask him what he had for breakfast, he will answer pizza. If someone should ask him the next day, he will answer “pizza”, not because he had it again, but because 1) That is what he would have wanted to have 2) It becomes a standard answer because he is tired of answering questions 3) That was his favorite breakfast that week so that’s his answer and he is sticking with it.

Not wanting people to think I give him pizza every morning, we decided to call it “Secret Breakfast”. Well…. as I said, DC doesn’t understand the concept of a secret, so anytime we go out with friends for pizza, or we are at a party where pizza is being served, he always asks for “Secret Breakfast” – then I have to explain what “Secret Breakfast” is to my friends or other parents, (because of course, they ask – wouldn’t you?) completely defeating the purpose of the secret part of “Secret Breakfast”. At this point “Secret Breakfast” is just something we call pizza, people now just ask him if he wants to take some home for “Secret Breakfast”, and yes, they also call it “Secret Breakfast” when they offer.

A surprise pretty much runs along the same lines as a secret. If we buy a gift, and I tell him not to say anything because it is a surprise, the very first thing he will do when he sees the person that we bought the gift for is:

– Go over to that person, point at them and says (to me) “Don’t tell anyone, surprise, shhh” and many times he will even tell me what the surprise is. I suppose because he is addressing me and not the person, he thinks he is not giving it all away.

Knowing all of this, I should have realized that the next time we went to Winter Guard practice, he would ask about Mrs. F’s birthday. It was still two weeks away. I was worried that if he mentioned it in front of her, she would know that something was in the works. There would be no reason for DC to know that her birthday was coming. I reminded him over and over and held my breath for the next two weeks. Fortunately he did not give it away, not for lack of trying though – he did mention it a number of times at practice but luckily she was not close enough to hear it.

I saved the story to post at a later date, after her birthday. My mind, being the steel trap that it is, filed it and forgot to post it.

We were out tonight for pizza with DC and his friends when DC asked for Secret Breakfast and I remembered the post – because this is the way my mind works.

Here is the “Little Bit of Faith” portion of this post.

Happy very belated Birthday, “Mrs. F”!

The one event that always sticks out in my mind is the High School Ice Cream Social performance in 2011. The performance was a last-minute addition to the Team’s schedule. Being so last-minute, many of the Buddies were not available to perform with our children.

The Team had never rehearsed, never mind performed without their Buddies before, so this was something totally out of their comfort zone. But there we were anyway, with 3 buddies. Mrs. F. had faith that they would be able to do this. I am not sure that many of the parents had as much faith, but Mrs. F. did.

There was a little bit of time to do a few quick rehearsals before the show but as I said, this was a very new experience for them – a few quick rehearsals without their buddies would be like starting from scratch. Mrs. F. gave them a pep talk before and after each run-though and made it very clear to all of them that they could do this!

She gathered them around for one more pep talk before they went out to perform. She believed in them so they believed in themselves. They knew they could do this!

And they DID! The show went off without a hitch. They gave a fabulous performance! How proud they were to be able to do this without help! Mrs. F. had faith and in turn, so did the Team (and the parents)…… All it took was a little bit of faith…….. And THANK YOU for the faith you have in, and the encouragement you give to our children!

There is no one better! Thank you for everything you do……..

Never Will Forget You – Tribute to Avonte Oquendo

Posted by TakingItAStepAtATime

Recently I had the immense privilege and honor to listen to the beautiful and heartbreaking song written in memory of Avonte Oquendo, by his uncle, Rocopera. Even over the telephone, it was apparent that the love he has for this child is immeasurable. The pain of this loss will never be healed.

“This song comes from a broken heart”

His heart IS broken – all of our hearts are broken. What happened to this beautiful child should never have happened. What happened is every parents’ nightmare. Those of us that have children with special needs know this fear all too well. We know that simple things like just putting your child on a school bus and sending him off to school can be terrifying. They are not with us, we are not in control, we are not there to protect and take care of them. As the mother of an adult child with autism, I know this fear. I live this fear. – We all live this fear.

Avonte’s disappearance drove that fear home for all of us. Avonte’s story is not something that happened to one boy or one family in New York – it happened to all of us in the Autism Community. A tragedy like this can happen anywhere – and it does happen everywhere.

“Never Will Forget You – A Tribute to Avonte Oquendo” was written not only as a memorial to the nephew he loved so deeply, but as a vehicle to raise awareness about Autism in general. Rocopera has spent the better part of his adult life advocating for/with the Autism community. His own son is on the Autism Spectrum.

In an effort to work through his pain, Rocopera has been spending much of his time writing and producing “Never Forget You”. He is also tirelessly working on and producing a documentary chronicling the events of that horrific 3 1/2 months. A memorial at the site is in the planning stages, pending the approval of Mayor De Blasio. Rockopera needs to raise awareness, he needs to know that Avonte will never be forgotten.

In an earlier post, I wrote:

As it has been said, Avonte, brought an entire city together. His disappearance brought an often, very separated Autism community together. It cast a spotlight on the problem of wandering/elopement of Autistic children and adults. He has raised awareness to the issues that many families face in trying to keep their children safe. Our children should be safe, at all costs…………. Avonte should have been safe in school.

– Avonte Oquendo should be memorialized, in any and every way possible.

“Never Will Forget You – A Tribute to Avonte Oquendo” will be released on iTunes 5 days before the October 4th anniversary of his disappearance, with all of the proceeds to be donated to credible Autism charities.

We will be posting more information about all of these projects in the weeks to come, but in the meantime, please help us spread the word about the release of this beautifully written and performed, tribute to Avonte.

I promise you that once you hear “Never Will Forget You”, you will never forget this haunting and so very moving song……………

……………………..as we will never forget Avonte.

9/12/14 –

Many Thanks to:

One Loco Mommy

Wendy Jane’s Soul Shake

Autism and Christianity

Soaring with Autism

For re-blogging and re-posting –

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

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

Re-Posting Tribute to Avonte Oquendo, by Vickie

The CALL TO ACTION – A Memorial for Avonte

ATTENTION NYC PARENTS : Avonte’s Law – Rally JUNE 12, 2014!

Second Star to the Right……… and hang a left.

Posted by TakingItAStepAtATime

DC and I were driving to the store this past weekend. He was listening to the Peter Pan CD that he had checked out of the library a few days earlier. Like many of the books he borrows each week, he already owns this CD, but still he must check it out from the library. The “library” CD’s are to be listened to in the car only – this is one of those “official DC rules” that he makes up in his head. I’m sure there are very good reasons for the rules he comes up with, but I really don’t know what these reasons are or where these rules come from, but he follows them to the letter – always.

DC has every version of Peter Pan imaginable. He has the old black and white Mary Martin version, the Cathy Rigby version, the Disney version, the non-animated version, Peter Pan that came out a few years ago (maybe more – I have no sense of time), Finding Neverland, the sequels to the Disney version and Hook. He has copies of the soundtracks to all of them as well. The only Peter Pan themed movie he would never watch was Hook. I do not know why but he refused to watch it. It happens to be my favorite version of Peter Pan so I really tried for years to get him to watch it. I’ve had to watch Peter Pan for more than 20 years, and at times it would have been nice to watch the version I enjoy.

Obviously this was not one of “DC’s rules”.

Somewhere along the line DC discovered that Robin Williams – the voice of the Genie, was in Hook – that was all he needed to figure out and now it is also one of his favorites. Everything is related, and once he is able to relate a character to another he likes, he’s “hooked”.

(One day I will write a post about how everything is related. It probably won’t make a lot of sense to you, but it will sure be fun for me to write)

After listening to “Tender Shepard” six times, I told DC he had to move on to a different song. He did, but we soon moved back to “Tender Shepard”. This song is from the Mary Martin/Cathy Rigby version of Peter Pan. This version seems to be his all-time favorite. Zoning out while listening to this song….AGAIN, I started to think about Hurricane Irene back in 2011, because

……. it is all related.

It was Friday, August 26, 2011. I was on my way to my first appointment of the day to look at a few MORE day programs. This is the way every Friday that summer had been spent. I generally have Fridays off during the summer so it was a perfect opportunity to go and check out day/work programs for DC, as he would be finished with school and his transition program the following June (2012). On the way there, I received a phone call from Doug.

“Listen, we are supposed to be getting a big storm here over the weekend – do you want to just take off for Vegas for the weekend?”

“WHAT???”

Many of you know that DC is terrified of storms. I don’t think it is the actual storm, it is the fear of losing power, that scares him. This storm was supposed to be a big one – a hurricane.

Okay….. it’s Friday morning.

I’m on my way to a meeting.

I can’t make this kind of decision that quickly- I just can’t think about this now.

But, I can’t wait too long because all of the flights will be booked.(This is me, not thinking about this now)

But, if we lose power I’m going to be sorry we didn’t go.

I have to concentrate on looking at programs, I can’t think about this now.

If we fly there, what if they close the airports later and we can’t get back on time for work and school? (Still not thinking about this now)

Maybe we can go somewhere closer?

What if we decide on somewhere closer and the storm shifts direction?

I called him back and suggested that he try to find somewhere closer and I would consider it.

After my first meeting, and failing miserably at “I can’t think about this right now” – I called Doug back. He was checking the weather and the path of the storm and decided on Pennsylvania – it may be rainy there but it should not be as bad as they were reporting it could get here.

After my third meeting, I went home, packed quickly (I must say I did a much better job packing with no notice than when I plan for a scheduled vacation) and when DC came home Doug came over, picked us up and we were off. I didn’t have any great expectations about this weekend. I really thought the weather would be bad and we would be sitting in the hotel room most of the time, and I did explain this to DC. As long as he was going to a hotel (his favorite) and there would be power, television and food, he was all for it!

We did consider, although it was never mentioned to DC -Hershey Park – weather permitting. A scheduled trip to Hershey Park a few months earlier had been a bit of a disaster – something I will not be writing about – and a do-over would be fantastic. But as I said, I didn’t have any expectations at all.

Arriving in PA, DC was happy to be in a hotel room. He took his favorite spot at the desk and happily edited his books on Friday night.

Saturday was a little bit overcast but a very nice day. We decided to take our chances with the Hershey Park do-over.

We could not have planned for a better day or a better time! DC got to go on all of the rides he missed during the “de-aster” (DC-speak) trip.

There was a total of 5 minutes of rain while we were at the park, even that didn’t really bother him as it normally would. It cleared up quickly and we continued on exploring the rest of the park.

Onward to the “Chocolate Factory” (Chocolate World). DC would happily skip the park and just go to Chocolate World. “Chocolate Factory” = Willy Wonka. There is not a single “Wonka” anything there, but it’s a Chocolate Factory and all Chocolate Factories belong to Willy Wonka, period…. DC’s rule.

We almost didn’t make it there on our first trip, and when we did, I held my breath the entire time. It was wonderful to be able to take him back there relaxed and breathing normally.

On the way back to the hotel, I spotted a sign outside of the Hershey Theater for Peter Pan staring Cathy Rigby. We had taken DC to see Cathy Rigby in Peter Pan when he was much younger and he just loved it. I noticed that there was a performance scheduled for Sunday afternoon and Sunday evening. The forecast was calling for rain on Sunday so we thought we’d check to see if there were tickets still available for Sunday afternoon. We decided to check on line when we got back to the hotel. I didn’t want to mention it to DC until we knew, so walking into the box office was not an option.

It turns out that there were tickets available!

On Sunday morning on the way to breakfast, making his trip the “best trip ever” – he found a bookstore.

The play was early enough so that we could still leave at a reasonable time to get home and sleep before work for me and the first day of school for DC on Monday.

DC loved the show, loved it! They announced during the curtain call that Cathy Rigby would be available for photos and autographs in the lobby immediately after the show was over! Could this get any better for him?!

If I had planned this trip for months, it could not have worked out better than this last minute, impromptu, Hurricane trip worked out!

DC met Cathy Rigby, had his picture taken with her, got her autograph and sat on her lap – I did try to stop him from sitting on her lap because DC is a BIG boy, but I was too late and she didn’t seem to mind. Her signed poster still hangs in his room.

How much better could all of this have worked out? I am still amazed about how smoothly this weekend went.

After the play we headed home, from our “Escape from Irene” weekend.

We arrived to find that the first day of school had already been canceled due to the power outages. It turned out that our side of town never lost power at all.

Two months later, we wouldn’t be so lucky, but for now we had just returned home from – in DC’s words – “The Best Trip Ever”.

The Great Band-Aid Obsession

Posted by TakingItAStepAtATime

“All children with Autism love stickers”

—- DC hates stickers! Hates them, but still people insist on giving him stickers, mailing him stickers and putting stickers on him! In the past, anytime we were at an event where a sticker was required, I always had to place it on the back of his shirt – he just could not stand it on the front (he wasn’t thrilled about having it on his back either, but he could tolerate it a little bit more there). Even now that he can tolerate a sticker on his shirt, I will hear about it the entire time it is there and he removes it the second we leave the event.

“All children with Autism love Legos”

—- DC hates Legos! Hates them, but still people insist on giving him Legos (not as much lately, but definitely when he was younger)

“All children with Autism love Minecraft”

—-DC hates Minecraft.

“All children with Autism love things that spin”

Okay, I’ll give you that one…………..

Other than his books and movies, the one thing DC really loves are Band-Aids. I am not completely sure that Band-Aids are on the list of what “Every child with Autism loves” – it is possible, I do not know, but I know that DC just loves them.

I believe the main reason for this obsession, as I mentioned in an earlier post, is that he’s never actually had the need for a Band-Aid – that I can recall.

I mean, I have really been lucky (still knocking wood), so much so that we’ve never had to use a Band-Aid. He loves Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.

Band-Aids, especially “character-themed Band-Aids” are on his “odd gifts list” along with the rolls of scotch tape, mentioned in an earlier blog.”

This has been an off and on obsession with him since he was very young. Then, he seemed to forget about it for a few years, not that he would ever pass up an opportunity to wear a Band-Aid if he happened upon some, but it wasn’t a daily thing.

But now for some reason, the obsession has returned!

It started slowly…….

Rounding out the Collection, we have Mickey Mouse (again, no injury)

…..just a Band-Aid here and there once in a while, but it has slowly escalated into this:

We were in a department store not too long ago and DC came across a table filled with cases, yes cases, filled with 12 boxes of multiple sizes of Band-Aids.

One would have thought he’d found the Holy Grail!

“Mom! Band-Aids! P-LLLLL-EEEEE-ASE!”

– Yes, we bought them………

The ‘I want a Band-Aid’ hints begin almost every night with…

“Mom. my leg is itchy”

“Oh, really? I don’t see anything”

“Mom, my arm is itchy and my leg is itchy”

He doesn’t always come right out and ask for a Band-Aid, at times he will, but usually he will just continue to tell me his arm, leg or foot is itchy, until I finally give in and say…

“Okay, go ahead”

Then off he goes to apply his 3, 4 or more Band-Aids.

The new swag

A few people have wondered and even asked why I “let” him do this.

Why? Seriously, these are the kind of issues that some people think I should be worried about?

I choose my battles and to me, this is not a battle. This is so far removed from a battle, that it is not even worth talking about – with him, that is. Apparently it needs to be explained to others.

He is not hurting anyone. Most of them are applied to his arms or legs – with the exception of one that he put across his nose the other day due to a pimple. It doesn’t interfere with his “work”, his activities or his life in general. It makes him happy. There are so many other/bigger issues to worry about. My time was never spent trying to make him conform to what other people may think to be “normal”. Safety issues – yes, his ability to navigate social or public situations – yes, communication – yes, independence – yes, life skills – yes but these little things that some people seem hell-bent to correct – no!

I could live without the Band-Aid wrappers all over the house…

DC calls me “Vickie” quite often. I think it is because he is always being told that he is an adult now, so therefore he should be allowed to call me by my first name. I doesn’t bother me in the least – I actually think it is kind of funny. This is one of those “connections” that he’s made in his head – he’s an adult, so he can use first names. I don’t like to discourage these connections that he makes. But some people seem to be horrified by it. Why? He knows I’m his mother. I know he loves me (he tells me all day long). He does still call me Mom more than half of the time and even if he did not, how is this interfering with his progress, his life, his job or anything for that matter? It does not.

I always find it a bit funny when other people point out these little “nothing” issues as ‘something I really need to work on’.

So, back to the Band-Aid situation….

Having just said that he only applies them to his arms, legs or hands……(and apparently he also has a stash in the kitchen, I knew nothing about)……….

please read my Facebook Status 8/6/14:

Last night I was on the phone with an automated system. I had to tell DC more than once to stay quiet because this system picks up any noise. After the fourth attempt, it was clear that the system was not going to take my information , so I gave up. I turned around to find DC with a Band-Aid over his mouth. I guess he didn’t trust himself to keep quiet on his own

And no, I did not get a picture, I was too busy laughing.

Even though I would ever advocate putting a Band-Aid over anyone’s mouth, and never would I encourage him to put a Band-Aid over his own mouth, I was still pretty impressed with his ability to make that connection in his head.

Progress and connections at times come out of the strangest of situations…………………