Pit Stop

Posted by TakingItAStepAtATime

A few days ago, DC was ready and waiting for his transportation to arrive to bring him to work. I was getting ready for work as well. The car arrived a little bit earlier than usual with a substitute driver. DC left and I went back to getting ready. Normally I leave for work about 5 minutes after the car leaves, but because it arrived early and I was not completely ready, it took another 15 minutes to get out of the door.

My car was parked in the driveway behind the house so you can not see it from the front of the house. I drove out, rounded the corner and headed up the driveway to find his transportation car at the top of the driveway. My initial reaction was one of panic. I was sure that something was wrong, but the driver was just sitting in the car. Then I noticed that DC was already getting out of the car so my next thought was that he decided he had to use the restroom. I got out of my car and asked what was wrong. The driver told me that he had forgotten his water bottle and was so obsessed about it, she felt she HAD to bring him back to get it. She was hoping that I would still be home. Granted, I am happy that he is so aware of his hydration and so attached to his water bottle. Drinking water was not at the top of his list a few months ago, it was always a battle so I am glad that it has moved up a few rungs on the ladder. Coincidently the one and only time he forgot to bring his water bottle to work since his first seizure (I was at the time convinced it was due to heat), just happened to be the day he had his second seizure – hmmmm. I don’t know if he put that together in his mind or if this is just a straight out ‘regular’ obsession, but he does not want to be without it at work.

Now there have been plenty of times when DC was still in school that he tried to get his school bus drivers to stop so he could run into a random house to use the bathroom. (There have also been times, not so long ago while out for a walk when I had to chase him as he was running up some strangers sidewalk towards the door because he decided that he had to use the restroom). I know how he can be when he forgets something as well. The driver said he kept poking her on her shoulder from the back seat. I get it. But, his school bus drivers, when they knew they had to bring him back home, would always call me to see if I was still home or if I could turn around and come back to meet him. This driver did not try to call and was making no attempt to even get out of the car. I wonder just how, from the driver’s seat with the car running was she going to check to see if I was home? You can not see my car from the front. She did not get out of the car – she just let him out and as I said, under normal circumstances, I would have been gone.

Hopefully in the future someone will call me – yes, I made that clear – very clear.

So how would this particular scenario have played out had I not have been there, you ask? I know exactly how it would have gone.

– DC would have let himself into the house to get his water bottle.

– DC would have left the front door wide open upon exiting the house and returning to the car; prompting the driver to ask if Mom was home. (He never closes the door on the way out, only on the way in – I do not know why.)

– “Yes”, would have been the response – his standard reply to almost any question.

– Driver would have driven away leaving my front door not only unlocked but wide open all day.

– Later that afternoon – assuming all of my possessions were still in the house , his after-work aide would have called to inform me that he found the front door wide open.

– Me, never knowing or hearing about the forgotten water bottle retrieval mission that morning from DC or anyone else, would have assumed that I had forgotten to close the door (even though I distinctly remembered doing it).

– Adding further fuel to the notion that I am losing my mind.

*****

Just an FYI – DC is 24. After years and years of training (a topic for another post) he is and has been able to get into the house himself after work. He has either me or staff there but there may be times when someone might be stuck in traffic or late for some other reason and before he had staff, I was always in a race with the bus. I wanted him to be able to get in, lock the door, call me and wait for me or his aide. Since he began having seizures, I do not want him alone for even a few minutes. My point here is – you don’t bring him home with out calling me or letting me know.

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.

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…………………