….and they cancelled Halloween (Part One)

Posted by TakingItAStepAtATime

(In a recent post, Second Star to the right……. and hang a left, written about our ‘escape’ from hurricane Irene, I mentioned that we were not as lucky a few months later)

It was Friday, October 28, 2011 we were gearing up for a marathon Halloween weekend. Now, I can be a lot of pressure on Halloween, I know this, but my friends seem to put up with it and fortunately DC loves Halloween as much as I do, so the “pressure” is not too much for him; he enjoys it.

On Friday night we met my friend Coach and her daughter, Candy at the haunted mansion. The ‘kids’ looked quite terrified, but they made it through. DC, although he looked like he was about to fall apart, wanted to go again, while Candy decided to sit out the second go-round.

Mansion

Coach, Candy, DC and I met Doug at a local diner for dinner afterwards. Doug was leaving that night for another leg of his quest to golf in all 50 states. He would be away for more than a week.

After dinner we all went home to get prepared for the 3 party marathon we had scheduled for the following day, one more on Sunday and then of course, Monday was Halloween. Usually the parties are spaced out a little more, but this year they were all crammed into the same weekend. It took a lot of planning costume-wise. The parties were back to back, and DC has grown accustomed to having a different costume for each party and another for Halloween itself (I love this child!!!) so I had to plan the best way for him to make quick changes between each party.

Saturday was a beautiful sunny day. I took this photo at noon outside the house right before we left to meet Tonya and DC’s friend, Salli at their house to begin our marathon.

Puck before the storm

As soon as we arrived, Tonya told me that her husband, Rick mentioned that the weather people were predicting snow; heavy snow. He warned that it could get really bad out on the roads and there still being leaves on the trees, may make matters worse.

What????

It’s October!

How much snow could we possibly get in October?

(We totally missed the “leaves are still on the trees”, point – What could that possibly have to do with anything?)

We decided that he didn’t know what he was talking about and even if he did – the sun was still partially shining – this probably would not even begin until much later in the day. We were used to the weather people making a mountain out of a mole hill, so we decided to go full speed ahead with our party plans.

It took only 30 minutes to arrive at Camp for the party. The change in the weather in those 30 minutes was drastic!

The snow was really coming down!

Still in denial about all of this….How long could this possibly last – It is October! We went inside and joined the rest of the party-goers that were probably in much denial as we were. It seemed as though everyone that RSVP’d attended and no one left early. It IS October, after all.

We met up with Coach, Candy, Katie and her daughter, Kate (who was dressed as Ariel; this made DC’s day). No one seemed overly concerned about the snow, the party went on as if nothing was going on and we really intended on moving on to the next two parties…..
until we had to get back on the road, that is….

Okay, so maybe we should skip the other parties – they had already been cancelled at this point, we just did not know that.

Katie and Kate witnessed a terrible accident on their way home, but made it home safely. Coach and Candy got home safely as well. We arrived at Tonya’s house to find her son in the driveway, looking at the very large tree branch that had fallen on his car. Okay – got it – “leaves still on the trees” – it finally clicked. Their power was out. Tonya went into panic mode (panic mode is usually my role – Tonya is normally relatively calm about everything) – yelling at everyone to get out of the driveway and out from under the other low-hanging branches. Her son, on the other hand, looked relatively calm about the branch laying on his car. DC and I got into my car which was parked under another very large, now very low-hanging branch and started home.

Okay, allright, I’ll say it…….. Rick was right.

We live only one mile from Tonya’s house but it took us 45 minutes to get home. DC was stimming wildly and scripting loudly about the power – his worst fear – all the way.

We made it home and YES we had power, a little unbelievable as our neighborhood seems to lose power quite often, but we did have power and we were thrilled.

Home safely, WITH power, DC and I went about our normal routine assuming that all of this would be over by morning. Within 45 minutes of our arrival home, the power went out. DC was screaming from the bathroom, I told him to stay there, got a flashlight and went up to get him. I hunted about for more flashlights, got DC’s pillow and blankets and brought them down to the living room. THIS IS THE MOMENT, right here that the “sleeping on the couch” situation began. 3 years later, we are still sleeping on the couch most nights.

It was early but I tried to convince DC to try to go to sleep and the power would surely be back by time we woke up – I really believed that, I really did. Of course I had to stay right there on the other side of the couch, so I tried to get some sleep as well.

We woke up on Sunday morning and still no power. Still convinced it would be back soon, DC had breakfast, under protest. Even though losing power is one of the things he obsesses about, he just can not understand that I can not make toast. He can have bread with Peanut Butter (something he ate everyday for lunch), but it was morning and mornings are for toast, not bread. There was plenty of other non-refrigerated items that he could have, but no, he HAD to have toast. He finally gave in and had some “un-toasted” toast and we set out to find coffee.

My landline was down, my cell was only working sporadically. Most of the time, I had to drive to the center of town to get any reception at all. We kept taking short trips throughout the day in search of coffee. I didn’t want to drive too far as with no information to be had, I never knew what we’d be driving into, but on the other hand I needed coffee and DC needed something to do. He loves to and will read his books for hours, normally, but not during a power outage – he is just much too distracted and upset to do any of the things he normally would do. I have driven him around for hours in the past when we had an outage, but this was different, there was really nowhere to go, trees and branches were still falling and I didn’t want to waste gas. I didn’t know where we would find an open gas station.

It was a very odd and unsettling feeling not really knowing what was going on out there. I felt cut off from the world. Between feeling cut off and my “dropping dead and how long will DC be alone before anyone knows?” obsession – I was not having a good time.

The day was spent, dealing with what I affectionately named the “raw sewage room” -RS Room for short – (Did I forget to mention that DC clogged the toilet the very second that the power went out? Did I forget that?) – and taking quick, not too long trips to find coffee. I did finally find a Dunkin Donuts (because apparently I always do) open at about 4pm. They did not have power and were just about out of everything but coffee was still available. I’m not quite sure why or how they still had relatively hot coffee available with no power and I did not ask; I ordered the bucket size.

At this point, DC was no longer fixated on the power coming back, he was just defeated, very quiet, no emotion, just going through the motions. We got ready for the night to come, I made another attempt at fixing the “RS room’, we read for a while and went to bed. Worried about the cold, I had DC wearing thermal underwear, thermal socks, slippers and his very heavy robe. I began piling blankets and comforters on us and at the point when he had just about enough, he yelled, “Mom! I don’t want to be warm!” – of course he wanted to be warm, but it was his way of telling me that I was putting way too much stuff on him.

Monday, morning came. It was Halloween – and still no power. Halloween was looking grim!

To be continued in “and they cancelled Halloween- Part 2”

(Happy Halloween to you all! Keeping our fingers crossed for No Storm today!)

Knock Three Times

Posted by TakingItAStepAtATime

DC and I attend many events, activities and parties. Many related to his autism or specifically geared to special needs children and adults, many are not. Although I do write about some of these events or trips, I certainly do not write about all of them as, in most cases, there is nothing significantly related to DC and his autism to write about. This event was not going to become the subject of one of my posts; it had nothing to do with Autism, there would be no princesses, no wizard, no costumes, no bookstore – just DC, my mother and I attending a fundraising event hosted by an old friend of mine.

After attending, I do feel the need to write about it, and write about it from the perspective of DC and his autism and how, at times people really do go out of their way to make DC comfortable.

An old friend of mine invited us to his annual fundraising event. We could not make it last year, I can not remember why, but we were available to attend this year. We invited my mother to go along with us. Knowing full well that a sit-down-dinner at a table with probably 6 to 8 other people would be tough for him (and me), I tried, as I always do, to relate* the event to something of interest to him.

Tony Orlando, The Honorary Chairperson, would in attendance. Now, I am old enough to know who Tony Orlando is, but I didn’t know how to relate him to something in DC’s world. There have been many times where I am surprised by who DC does know. Usually I find out that they are “the voice” of a character in one of his movies. I checked on-line to see if Tony Orlando might have been the “voice of” anyone DC might relate to. He was not. But then I realized that whenever we hear “Knock three times” on the radio, I make DC sing along with me. We’ve done it enough times that he does now recognize the song. It is also one of the few songs that DC does not say, “Mom, please STOP singing!”

First hurdle, relating this event to something in his world – check!

The event was being held in the midst of our Halloween party season. We had already attended one party and we had a few more on the schedule in the next few days. The event’s description indicated that it would be a 40’s style gala. I did not know what that really meant but I went out and purchased a 40’s style men’s hat to go with DC’s suit.

Second hurdle, turning the event into a “costume party” – check!

My greatest concern was the seating arrangements. As I talked about in an earlier post, there are not many things that we avoid because of DC’s autism, but we do try to avoid situations where we will be seated at a crowded table with strangers. There are times when it can not be avoided, and we get through it, but if I can avoid it, I will.

I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse.

I was told that I had to e-mail someone for reservations before purchasing tickets. I am not one that ever asks for special treatment or accommodations for DC, but since I had to send an e-mail, I decided I would just mention that DC tends to get a little bit anxious in crowds and if they happened to have a table that was not full; would it be possible to be seated there? I didn’t want them to go out of their way or change anything around, I just thought that if there was already such a table available, I would appreciate it if we could be seated there. It wasn’t a deal-breaker, we were going either way, but since I had someone’s ear I thought it could not hurt to ask.

DC has issues with many types of clothing, more-so now than when he was younger, but there is nothing better, in DC’s eyes, than wearing a suit. I suspect the fact that people tell him how handsome he looks is the number one reason – if you neglect to tell him just how handsome he looks, believe me he will bring it to your attention. Add the hat “costume” to his already handsome apparel and he was over the moon.

The very first thing DC noticed upon arrival was the sign for the “Grand Ballroom”. I had not thought of this aspect when looking for things relatable for DC. Not only was he going to see the ‘voice of’ “Knock Three Times”, while looking handsome in costume, but we were going to the “Ball”! How did I miss that one?

We were in the lobby with quite a few others who had arrived a few minutes early. We were told that we had to wait a few minutes as the staff was still in the process of setting up. DC was having the normal anxiety he has upon arriving anywhere. I always know it is coming, he just needs a little time to shake it off. The woman at the door noticed he was having a difficult time, and shuffled us into the ballroom. We were away from the crowd and he didn’t have to ‘wait”. He would have been alright waiting with everyone else, but it would have taken him longer to shake his ‘arrival anxiety’, so I was very appreciative that she let us in.

We found our table. It was the very last table all the way in the corner. It was perfect. DC, who generally is not aware of anything around him in terms of pushing his chair out, getting up from the table without looking to see if anyone is coming or putting his coat on, arms flying outward to accidentally hit anyone that might be in range, had room behind him so he would not bump into anyone else’s’ chair or knock anyone over when he got up from the table. There was no one behind us to bother if he felt the need to get up and dance. We were the only people in the ballroom other than the staff and a few people I assume were with the organization, for quite some time. Not long after, Tony Orlando came down the stairs. I do not like to bother people. DC has had his picture taken with many people over the years but it was almost always as a photo op. I just do not feel right asking people that are not there for that reason, to take a picture. My mother, had other ideas. She reached into her box of ammunition and pulled out the ‘Mom Guilt’….. “Oh you have to!” , “He won’t mind, he’s used to it” (that went on for awhile), she stared at me for awhile and then resorted to the sideways glance, “Now, Vickie” in a tone I hadn’t heard in years, I finally gave in, only under the condition that SHE had to do the asking.

She went over and asked him and of course he said yes. I don’t know what else she said to him, but he was happy to do it.

First, he told DC that he looked like a movie star. You know that won DC over completely. I told him that his friend BB and Mrs. H will be so jealous. (That is usually DC’s line when we go somewhere that he is excited to be, but I decided to use it just as an added incentive to help move him out of his anxiety). Mr. Orlando was very good to DC. They had a little chat and he told DC that they would be “friends forever”, and DC certainly believes they will.

I am officially adding Tony Orlando to the list of people I will always hold in high regard for not only taking the photo with him, but taking the time to actually try to have a conversation with him and making him feel special.

When they began letting all of the other attendees into the ballroom we realized that we were the only people that would be sitting at our table. One of the women that I had e-mailed before we purchased the tickets stopped by to be sure we didn’t feel as if we were being isolated. It was a perfect table and we did not feel isolated at all. We didn’t expect them to go that much out of their way to give us our own table, but I was so glad they did. DC had room for his ever-present book, he was able to get up and dance behind the table when he wanted to. There was a window right there that helped to keep him occupied; he loves to stand and just look out the window. When it got dark outside, the window then served as his own personal mirror. There is no one that loves looking at himself in a mirror or any reflective surface more than DC does, especially that night , while wearing his new hat.

Third hurdle – Not siting at a crowded table – check!

He enjoyed watching the ballroom dancers they had performing. At one point I did take him out closer to the dance floor where he could watch them (and follow along, pretty well, I might add) from the sidelines. He sang along with “Knock Three Times” and they even had pizza bites as one of the appetizers! What could be better!

Forth hurdle – DC’s very limited food list- check!

He had a ~~wonderful~~ (oops) ‘terrific’** time. Fortunately the ‘drop the chocolate, frosted, cupcake strategically down the opening of his jacket’ incident occurred toward the end of the evening; the smeared chocolate all over his shirt, tie and the inside of his jacket did not ruin the entire evening.

I did contact my friend, Joe the following day to thank him and to let him know how much his people went out of their way to make DC comfortable. I appreciated everything they had done.

They have also been added to my list.

*(That “Everything is Related” post I keep threatening to write IS now in progress and will be posted at a later date)

** “terrific” DC’s latest word, replacing “wonderful”.

“PLEEEEEEEEESE”

Posted by TakingItAStepAtATime

(code word of the day – ‘Paper Towels’ = Toilet paper)

A few weeks ago, DC and I were on our way to a dance. I was planning on grocery shopping the following day but decided to stop at a convenience store to pick up a roll of paper towels – just as a little bit of back-up until I went shopping the next day.

I intended to pick up only one roll as I did not see any need to pay convenience store prices when I would be going to a grocery store the following day. It was no emergency, but I do know how quickly they seem to disappear in our house.

DC came into the store with me, hoping to pick out a treat. He went to the ‘treat’ aisle and grabbed his bag of Combos – no surprise there. I went to the next aisle. We met in line at the register.

There was one person in front of us and another behind us. DC looked at the single roll of paper towels and said,

“No! Two! Please!”

He was very loud and adamant about it. Alright, so he was nervous about running out of paper towels. I did think that it was a bit odd that he was so worried about paper towels, but not a big deal. We still had the one customer in front of us so I said “Okay, if you want two, go over and get ONE more, but you have to hurry”

DC went running over to the other side of the store.

This child, has THE best sense of direction of anyone I have ever met. He remembers how to get anywhere we’ve ever been. He always seems to know right where he is. He does NOT get this from me. I still get lost in the mall. For someone who has this type of directional sense, he just could not take direction to the paper towel aisle, even though there were only 3 aisles in the store and he had seen me go to the aisle only a few seconds before.

He was walking around, looking up in the air, trying to follow the instructions I was giving him from the line. At this point, the woman ahead of me had finished her transaction and not wanting to hold up the woman behind me, I called to DC and said “Never mind, we will get more tomorrow”.

The man behind the counter said, “It’s okay, I will just ring up an extra one if he really wants two” . He was ringing and helping to give directions to DC – it was beginning to get ridiculous – there were only 3 aisles, but I knew if he did not find the aisle soon he would become very upset and frustrated (he was already beginning to) and this agitated mood would carry itself over to the dance we were headed to. Just as I was going to leave the line to help him, the clerk said “I think he’s found them”.

Around the corner comes DC with not one, but an armload of at least 7 rolls of paper towels! I tried not to laugh and told him that we did not need that many, and to please put them back.

DC stood in the middle of the store, with his arms full of paper towels and yelled “PLEEEEEASE” “PLEEEEEASE” as if his life depended on it. He does not beg this much or this loudly when he wants me to buy him a book or movie. I told him to put them back but he just stood there, arms full yelling “PLEEEEEEASE!”

The clerk was now laughing, not at DC, but at the sight of him standing there with so many paper towel rolls. The poor woman waiting patiently behind me said “He sure loves his paper towels, doesn’t he?”

“Yes, apparently, he does today.”

I had no idea what was in his head or why he HAD to have them right then, but for some reason they were very important to him in that moment. I promised him that we would get more the following day at the grocery store (and we did), so he finally put them all back except for the additional roll I had agreed to earlier.

He was still out of sorts when we arrived at his friend’s house, but fortunately, over it by the time we got to the dance.

I suppose, still, after all this time, I do not always know just what is important to him or why it is important at any given time. Just when I thought I’d be adding paper towels to his “Odd Gift List” ; the following day, in the grocery store, he didn’t seem concerned whether we bought more or not, but for some reason, the day before, it was very important.

(After thinking about it – a lot – because that is what I do; and writing about it, because at times it helps me to figure things out* and after just writing that very last paragraph, the light went off in my head – I am wondering if it wasn’t the paper towels at all, just the fact that I was only buying one at the time and at the grocery store, we always buy a package? “Buying more tomorrow”, doesn’t make a lot of sense in his world – at that moment in time, we were just buying one and this had never happened before)

**I was told long ago by one of DC’s first teachers, Mrs. T, that, with Autism, not all things can be explained and I might just drive myself crazy trying to figure everything out. This is true, very true, but it does not stop me from trying…..

Because, Because, Because, Because….BEEEE CAUSE

Posted by TakingItAStepAtATime

Autumn In OZ

Right up there on DC’s ‘fandom’ meter with all things Disney is the Wizard of Oz. I can not really put my finger on how, when or where this fixation developed as it is not a Disney production, but it certainly did. DC owns every version of every book, movie and soundtrack of The Wizard of Oz.

There is nothing that would make him happier than a visit to OZ.

As I mentioned in Part One of this post (Hello Dolly)

I 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 as our Halloween trip. 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 3, 4 and 5. Tickets had to be purchased in advance. and I was told that it sold out very quickly.

Dollywood the day before worked out so, so much better than expected (with the exception of the ‘Mommy-Meltdown’) – so we were excited to get to “the Mountain of Oz’ – as DC calls it. I was still a bit apprehensive about the bus ride to the top, but I realized quickly that most of the mountain drive was by car.

I didn’t realize that DC had packed his watch and was wearing it in the car. I only did realize when we started getting minute by minute updates from the back seat:

“Mom, it is Eight-‘Firty’- Seven, we have to find Uncle ‘Liar’ –

“Mom, it is Eight-‘Firty’ – eight, we have to find Uncle ‘Liar’ –

and so on……….

DC has a difficult time pronouncing most of my brothers’ names. Uncle Larry, is ‘Uncle Lally’ (he can pronounce “Harry” and “Mary” but for some reason “Larry” is impossible for him). Uncle Lyle is ‘Uncle Liar’. He always could pronounce Ted and Skip – or so I thought. He does pronounce “Ted” correctly, but at one point I realized that all this time, he was really calling Skip, Uncle ‘Scamp’ – it sounded so much like ‘Skip’ all of the times that he’s said it that I didn’t realize he was actually calling him ‘Scamp’ until he wrote it down one day.

We arrived at the sky-resort where we were to catch the bus. We met “Uncle ‘Liar’, my sister-in-law and my niece in the parking lot. IT WAS COLD!!!!! My brother was disappointed that we were not in costume (they were not, but he knows me well). My title of “Queen of the Costume” was now tarnished, forever!

(Did I mention that it was COLD!!!???)

– I have to give props to the “Autumn at Oz” people for sending out more than one e-mail to let ticket holders know just how cold it was excepted to be. This would not have occurred to me and thanks to them, we were prepared – But still….. IT WAS COLD!!!

We had a little time after we checking in to have some hot chocolate and coffee. There was a couple of buildings open for us to go and get warm while we waited.

Needless to say the Italian Ice vendor outside did not do very well on this day. Hopefully he did better on Sunday.

After our hot chocolate/coffee/heat break, we went out to board the bus. We were first in line for our bus, which means we would be seated all the way in the back. My sister in law gets a bit of motion sickness, made worse by riding in the back. She and my brother were allowed to take the front seat, while DC and I took one seat in the back and my niece and Doug took the other, a decision my niece would soon regret.

Now we were “Defying Gravity” on our ride up to the top of the mountain –
while desperately trying to “Keep away from the Jitterbug” –
to “Ease on down the Road”, –
on our journey to reach “The Merry Old Land of Oz”.

The Wizard of Oz soundtrack was playing on the bus on our way up the mountain; Doug, being Doug, decided, out of nowhere, to just belt out “If I were the king of the Foreeeeest”

I will never be able to describe the look on my niece’s face, ever. I told Doug that he was embarrassing her, but that is what he lives for. The look on her face was priceless and although I felt sorry for her, I just could not stop laughing. She was just mortified. Not being able to stop laughing actually distracted me from the ride that I had been so apprehensive about. I will never forget that face and even now as I’m writing, I am laughing.

Exiting the bus; we soon ran into Dorothy and Toto sitting near a fountain. I have to hand it to these characters, it was so cold but they never let on, one would never know by looking at them that they were freezing.

(It was never my intention to turn this post into a visual tour, but I can not help myself. It was impressive.)

We followed the path and came upon Professor Marvel. He warned us all about the storm that was predicted to come through at any time!

We continued on the path to Kansas and where we would hopefully find shelter from the oncoming twister.

: Entering Kansas

: Hmmmm, the Wizard in Kansas?

: Miss Gulch!!!! YIKES!

: Cold Dorothy

We found the Gale farm. While waiting to get into the house, Dorothy saw DC waving to her through the crowd. She walked into the crowd to greet DC and launched into the whole spiel – She was very nervous. Miss Gulch tried to take Toto for chasing her cat. She needed to find Auntie Em to protect her and Toto from Miss Gulch.

“If you see Auntie Em, please tell her I need help”

DC ate it up. He felt as if he was a part of the story.

Heading into Dorothy’s house, the Ruby Slippers were on display and a band played on the front porch.

Once inside we found Auntie Em and DC relayed the message from Dorothy. Auntie Em was thankful and told DC that if he saw her again, please tell Dorothy to come home.

But we had to hurry to the cellar……. the storm was fast approaching!

Oh NO! It’s a Twister!

“The house began to pitch. The kitchen took a slitch*. … “

Half way down the stairs on the way to the storm cellar and partially through the ‘twister’ DC said, “I am getting very nervous about this” but he continued through the dark through the storm. When the storm was over, we found the house a mess and the floors topsy turvy – it was hard to stand up straight.

We walked outside to hear the Mayor declaring the Wicked Old Witch, dead!

The Witch Is DEAD!

“It landed on the Wicked Witch in the middle of a ditch, Which was not a healthy situation for the Wicked Witch”*

Ding Dong!

DC was happy to be out of the house and excited as he was now realizing that the journey we were on was moving in order, right along with the story. The Yellow Brick road would be coming into view shortly.
We rounded the corner and there we met Glinda. Glinda, in DC’s eyes is equivalent to a Princess. She has “princess status” in his world. He is always happy when Glinda appears, and now he would be meeting her in person!

Onward through Munchkin Land .

Leaving Munchkin Land, the munchkins told us that we had to “Follow The Yellow Brick Road*” – and so we did.

– Along the way we came across every character that resides in the Land of Oz – good and evil.
I can’t say enough about the actors that played these characters. I am told that they are all volunteers. These people were impressive. They were definitely “Disney-Caliber”. Not only were they out there all day, in costume, in the cold, but they never broke character. A few even burst into song.

Let me tell you, if DC decides to throw a line at you, you better be able to respond, in character and correctly. Believe me, his interaction with the Oz characters was no different that his conversations with ‘his’ Disney Princesses. They all had the proper response or song to whatever DC decided to discuss with them and we all know that DC can come up with the rather obscure reference. One HAS to know the movie inside and out to pass the DC realism test. Each and every one of them passed with flying colors.

Once we walked a little bit of the way down the Yellow Brick Road, the wind seemed to die down and we were in direct sunlight; the hats and gloves came off – jackets were still needed but it was really, really nice there.

The Scarecrow sang when DC asked him about his brain and then he pointed us in the direction of the Emerald City – although he could not seem to make up his mind.

DC could not resist knocking on the Tin Man’s chest
– just checking for a heart

“Lions and Tigers and Bears! Oh my!”*
The Cowardly Lion……
– and yes, Doug showed great restraint in not belting out the ‘King of the Forest’ tune again.

We were now getting closer and closer to the Wicked Witch!

“I’d turn back if I were you!”*

But we didn’t turn back……. Who’s afraid of a Wicked Old Witch anyway? But, curses, we neglected to bring our buckets of water! We’d have to take our chances.

After DC and my niece both declined the Witch’s offer to join her flying monkey army, we were on our way, fully intact. PHEW!

We approached the poppy field and said one last goodbye to everyone we had met along the way.

DC, of course had to call an impromptu powwow to make sure that each of the characters were absolutely aware of who they were supposed to be….
– Just in case they didn’t know.

“We’re off to see the Wizard”*

But first……. we had to ask for admittance into the Emerald City.

I so wish I had thought to take a video of this exchange. DC went through the entire scene – he rang the bell, the door guard yelled at him and slammed the door for ringing said bell. He then followed the new directions, now that the sign was turned to the proper side, and knocked… because of course we know that the bell is “out of order” – he laughed and laughed. I think this may just have been his favorite part of the entire day in Oz.
His cousin really got a kick out of how much he was getting a kick out of all of this.

Directions followed properly – we were granted permission to enter the Emerald City and given an audience with…..
The Man behind the curtain……. The Wizard.

Finally DC had the opportunity to recite “There’s no place like home”*.
Wish granted, and we made our way back to the bus, but first we came upon the characters once again, this time from the original book.

I read somewhere that the Emerald City was lost to a fire. It is a shame; based on the quality of the Yellow Brick Road – I have to imagine that the Emerald City must have been magnificent. Even with the loss of the Emerald City, the story was told from beginning to end.

We were right in time for the bus. I had photos to post so this kept me occupied on the bus ride back down the mountain.

My niece opted not to sit with Doug on the way back down.

I really do not know just what I was expecting at “Autumn at OZ” but I have to say, it was above and beyond anything I could have imagined. It was beautiful, very well maintained and VERY well staffed. It was such a fun day. Yes, it was cold, but we were warned and we were prepared. The trip was well worth it. We had a wonderful time (“terrific time” – ‘terrific’ being DC’s new word).
The whole adventure from the bus stop to the end was very well organized. There was not a long wait for anything.

I would recommend this event to anyone. It is a shame it is only open once a year, but if you are an OZ fan (even if you are not), it is well worth it. DC will never forget his trip to OZ.

I have to talk a little bit about my niece as well. My brother and his family have lived in Tennessee since DC was born. My niece and DC have only actually met each other maybe three times since she was born. So she has not spent much time with DC at all over the years. I have to say I was so impressed with her. She was not afraid of him – you might think that is an odd thing to say as he is her cousin, but believe me – it’s happened, more than I care to think about. She put up with him hugging the stuffing out of her all day. She made attempts at conversation with him, even if the response she got didn’t have anything to do with what she originally said to him. The day went wonderfully and HE is completely enamored with her.

I am so glad we had the opportunity to visit OZ with them – I think we all had a fabulous time.

Even this guy…………

“This Guy”

In the event that anyone may be concerned ……..

after dinner with my brother and his family, we were able to find a bookstore…

“For Sami, Love Daddy” #WorldDownSyndromeDay

Posted by TakingItAStepAtATime

I realize that this story was originally written about Down Syndrome Awareness Month. But it was also written about one of DC’s best friends and one of my favorite people. We have watched Sami grow up into an amazing young adult (and quite the fashionista to boot). We are lucky to have Sami and her amazing family in our life.

*****

In 1992, when Sami, who has Down syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

This year Sami, now 22 years old, returns to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

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” )

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….

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!

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…………………