Everything is related – The Paris Edition

Posted by TakingItAStepAtATime

Back in May we went on a trip to Paris and London. There are so many things that DC can relate to in London without me having to come up with them for him, that I wasn’t worried. Before London though, there would be a 4 day stop in Paris.

Relating the things that DC loves to anything else just helps to make it more enjoyable for him. DC loves to travel, but if we are not traveling to Disney World I will always try to come up with something to make the trip more interesting and exciting for him.

We were going to be staying in Disneyland Paris for the four days, one of those days would be spent in the city. I knew the day in the city would be very boring for him and I really could not come up with very much that he could relate to in Paris other than Madeline, so I went with that. I was later very surprised at the ‘relations’ he was able to come up with on his own.

So here we have the 5th installment in the “Everything is related” series – The Paris Edition:

Yes, this could possibly all be a ploy to make you look at my vacation pictures (be thankful, not all :), but every picture you see here is relatable to something for DC.

Again, we begin with Disney. There would be no problem here. We arrived at our hotel – New York, what could be better! DC’s very favorite city! This was a “two birds-one stone” kind of relation – Disney and New York City – together!

There were of course; Princesses!

“Oh my God, it’s Cinderella!” – during this trip he came out with a few lines I had never heard him say before – “Oh my God”, being one of them.

What could be better than a princess? Four princesses, of course…..

….especially when they are willing to spin for you!

The Princess Room in Disneyland Paris is a little bit different from Disney World. In Disney World, you get in line to get into the room where you can meet 3 or 4 princesses one by one. In DLP, we had to make a reservation to see the princess. The reservation gets you in to see one princess (there are two inside, to keep the line moving). You are not told what princesses are in there and you do not know who you will see until it is your turn and you round the corner. The people managing the line are not allowed to tell you which princesses are inside and they change them every half hour. The line manager saw how excited DC was to see a princess and pulled me aside to ask me which one he wanted to see. I told her he would be happy with any princess, but she insisted. We had the choice of “Brave” and “Ariel”. Of course, I chose Ariel. I have spent too many hours standing in line at “Ariel’s Grotto” over the years to let an opportunity to see Ariel pass us by. I wish I got a picture of his face when he turned the corner and saw her!

After he had her dance with him and of course spin, he said: “Please say hello to Prince Eric for me” – another new line; correct grammar, correct pronoun.

Needless to say, Disneyland Paris was a big hit.

Now onto Paris.

DC really loves all of the Madeline books. I am sure he has them all. He especially loves the Madeline movie that encompasses many of the stories from the books into the one movie. This was really all I had to go on. Knowing full well that sightseeing in Paris was not going to be very exciting for him, I really tried to push the Madeline angle before we arrived. We talked about the Eiffel Tower and the time that Madeline and Pepito became trapped at the top all by themselves.

We went to the top. It took a while. It was so crowded. It was cold. There was a nice view. He was impressed, but only slightly.

Moving on……

Before we visited the tower, our first stop which happened to be right where the train in let us off was the Arc de Triomphe. Thinking that he would not be at all impressed with this because to him it was an arch, nothing more, I was surprised when he recognized this arch – from Anastasia. I had forgotten all about that movie. I was kicking myself for not remembering it and looking into more Anastasia references before we left on our trip.

Thinking I had reached the end of Paris ‘relatables’ for DC, we opted for a Seine River Cruise just to get in a few sights quickly without sending him completely over the edge of boredom. On our way down the river I realized that this was the same river that Madeline fell into and was rescued by a dog they later named “Genevieve” (yes, I have seen this movie more times than I’d care to admit).

He was impressed for a minute or so.

Continuing down the river, the tour guide announced that we were coming up on Notre-Dame Cathedral. DC chimed in with:

“Chris-mar-a-dull”

What???

“Chris-mar-a-dull”

“Es-mer-eye-da”

“DC, I don’t know what you mean. Can you spell it for me?”

“Mom! Chris-mar-a-dull! Es-mer-eye-da!”

He was getting exasperated with me.

“HUNCHBACK!!”

Another reference that I completely missed – Quasimodo and Esmeralda – The Hunchback of Notre-Dame! (I did have to write those pronunciations down right then and there so I didn’t forget).

Our decision to take this tour instead of sightseeing on foot turned out to be a good one. It started to pour! This did not upset DC as much as one would think for some reason, but it would have been the END of the day in Paris had we been out walking around.

Boat = Saving the remainder of the day.
Paris London 053 It was still raining when we got off of the boat at the Louvre. I did remember that one part of the Madeline movie took place inside the Louvre. I mentioned it to DC as we headed in that direction. We had no plans to go inside but it was close to a few restaurants and the metro.

While running through in the rain, DC pointed out the Louvre Pyramid.

“From Madeline!” – I have seen that movie many times but I do not recall ever seeing the Louvre Pyramid at any time during the scenes at the Louvre. He recognized it – so I’ll take it!

It was a long day and with the rain, the Pyramid was our last sight for the day. We stopped for dinner and headed back to Disneyland.

I definitely dropped the ball relating Paris to DC’s world. I am happy and a little bit impressed that he was able to pick it up and run with it, this time around.

Best Camp Ever!

Posted by TakingItAStepAtATime

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Feeling bad that he had to miss so much of the little bit of time he was scheduled to go to camp this year, I arranged for him to attend on the last two days instead of just his scheduled Friday. It did not make up for the rest of the summer but at least he would be there two days in a row during the last week.

When I called to ask if he could attend the extra day the director let me know that her nephew *Ron would be there volunteering that week. Ron is one of DC’s favorite people at the camp. Ron has been around and volunteering for quite a few years. Like most of the volunteers, he spent a good part of his summers at camp.

DC really, really likes Ron and when DC likes someone – he really LIKES them, to a point that he really needs to be reeled in so as not to frighten the subjects of his admiration. DC really does not understand that not everyone wants to be hugged, not everyone wants him right in their face all of the time. He gets so excited over these chosen few that I really worry that he will end up pushing them away. You have not experienced fear until you see this guy come barreling at you at full speed. Even though at this point I know he is running to give me a hug and even though I know he will be able to stop before mowing right over me, as he is coming at me and in the moment, I am still convinced that he is going to knock me into the next town.

The friends that he sees often are used to this and because he sees them often do not always get the in-your-face DC…… not continuously, anyway. There are a chosen few that he does not get to see all that often, that really get the full DC-experience. If I know we may be coming in contact with any of these people ahead of time, I do try to have a conversation with him before we arrive.

He is supposed to ask permission of the person before hugging, unless of course it is someone we have already established does not mind being on the receiving end of that back crushing hug. Normally when I have to make a rule, DC is good about adhering it. This particular rule seems to give him a bit of trouble. He just gets too excited to think about the rules.

He has had a few experiences where someone was absolutely NOT happy with DC’s attention. In one instance it caused a schoolmate to have meltdown. This upset DC for days. He doesn’t understand. It is not clear to him why he can hug some friends and not others. Some just try to avoid him, a few put up with it because they understand and others do not mind at all and actually are happy to see him. Ron is in the “happy to see him” group.

A few years ago, Ron moved down south with his family. DC continued to look for him at camp and every camp event throughout the year. As soon as he was aware that a winter camp activity was coming the very first question would be about Ron. It took a good long while for him to understand that he had moved far away. I am still not sure that he quite understands ‘moved away’ but he does finally understand that Ron will not be there all the time as he once was.

Ron does come back on vacation to visit his aunt during the summer and comes to volunteer while he is here. In case you missed that…… He spends his vacation volunteering at the camp. Impressed? I certainly am.

DC was so happy to hear that Ron would be there and I am so glad I opted for that extra day. Ron doesn’t seem to mind having DC all over him all day. He is very good with him and I don’t feel as if I have to give DC too many instructions beforehand because I know Ron can handle it.

Halfway through the last day of camp I received a text from the assistant director with this photo.

When my friend Tonya brought DC home that afternoon (her turn to drive) she told me that a couple of kids asked her to take a picture of them with DC. She didn’t know their names but she would send me the picture later that day.

It was a another picture of Ron. DC was thrilled to have these photos. They are now the wallpaper on our computer, so he can look at them every day. I can not say enough about Ron. He made DC’s last days at camp so much more fun and happy.

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever – and a good part of that due to his friend Ron.

*****

*Name changed

*** The other friend that asked to have his picture taken with DC has been cropped out only because I do not know his name so I could not get permission to use his photo.

Things I have learned, things I have noticed and things that might just be in my own head

Posted by TakingItAStepAtATime

Things I have learned since DC’s seizures began:

I have learned that seizures coming out of the blue at his age is more common than I realized.

I have learned that although I have been told many times, that seizures are not life threatening, they most certainly can be.

I have learned that when seizures begin at his age, they will most likely continue for life.

I have learned that all of the testing in the world might never tell us anything.

I have learned that I will not know if the medication is working until it doesn’t.

I have learned that this is going to be a very long road.

I have learned that “calm” will never be a word used to describe me……. wait, we knew that one already.

I have learned that I can actually drive while having a panic attack, but I would not recommend it.

I have learned that even if I wake up an entire hour earlier than usual so I can take a shower before he is awake and out of bed (because I am so panicked about being in the shower and not being able to see or hear him) that he has some sort of radar that goes off to tell him that I am awake.

I have learned just how quickly I can run up the stairs any time I hear a noise.

I have learned and understand that plenty of people experience this and go on just fine. I can’t get past the fear of him hitting his head on the way down.

I have learned that nothing is predictable…. My friend’s message to me says it best:

Our years with our kids have given us the wisdom to be able to have as much of a stable daily life as possible. The routine and the predictability of our day-to-day with them is all we have to keep us from losing it. A small upside to life with our sons is that we can, to a certain extent, control what our days look like, and we come to depend on that predictability just as much as they do. We know what to expect, we plan for every behavior, we know what every sound they make means. It’s how we cope. And having this happen doesn’t just pull the rug out from under you, it unravels the whole damn rug. I just hope you get some answers and the road to getting those answers doesn’t take you through hell and back.”

Things I have never noticed until DC’s seizures began:

I have never noticed (probably because I was so used to it) that DC’s dances at times involve him throwing himself on the floor.

I have never noticed just how long it takes him to take a shower because I have never felt the need to stand right outside the door before.

I have never noticed just how many sharp edges there are on all of the furniture in the house.

I have never noticed just how many times he feels the need to go up and down the stairs every day.

Things I have come to think may be possible precursors to his seizures:

DC’s first seizure happened on a Sunday. I specifically remember telling Mrs. H on the Friday before that I thought he was heading for a crash. He had been so overly hyper, happy hyper but over the top, laughing uncontrollably and talking about things he normally doesn’t really talk about, that I was sure his allergies were due to kick in. He was like that the entire weekend.

After this last seizure, when I spoke to Mrs. H, who had picked him up from work and drove him to his camp activity, she said he was very excited about going to camp (he always is), but more excited than usual. He also gave her specific details about what he did at work and what he was going to do at camp. This is not something that usually happens. We normally have to drag information out of him and when we get answers, they are usually standard DC answers. The biggest thing was that he said, totally unprompted “Say hello to Mr. H. for me”. I know many of you do not know DC personally, but those who do, know this is not anything he would ever say. This is not his manner of speaking. *Tam, the program director at camp also informed me that DC, while always excited to go to camp seemed to be overly excited that night. He even did his entire Arts and Crafts project (he is not an Arts and Crafts kind of a guy) and then some extra.

Things that might be just in my own head (or things I may be reading too much into):

When Mrs. H mentioned “Say hello to Mr. H for me” – I remembered the only other time I had heard him say something like that and it got me thinking. We were in Disneyland Paris almost exactly a month before his first seizure. When he met Ariel in the Princess Room, he said to her, “Say hello to Prince Eric for me”. I was blown away by that and actually mentioned it in my still unfinished post “Everything is Related – The Paris Edition”. The morning after his meeting with Ariel, he slept until 11:30!!!! The one and only time he has ever slept that late was when he was sick in Florida and even then he did wake up a few times but then went back to sleep. I normally start to think there is something wrong if he sleeps until 8:00 am. Granted we were exhausted, but even exhausted, he never ever sleeps that late.

When DC started coming out of his first seizure, he make a horrible noise that sounded like he was choking. I am told that this is normal. When he had his second and *Kim described the noise as a “weird snoring sound” I remembered that night in Disney, waking up and hearing DC snoring very oddly, so oddly that I shook him to make sure he was okay. He said he was and went right back to sleep. I am wondering now if he actually had a seizure during the night and I just didn’t know. He was so tired the following day, but I just wrote if off to travel, jet lag and the exhausting day we had the day before.

I don’t think I will never know for sure.

So now do I worry each time he says or does something that before this happened would have been viewed as progress? I don’t know. I don’t know what I am supposed to be looking for.

Fortunately, so far the medication does not seem to be having any adverse effects. He has been going to bed much earlier than he ever has before but, quite honestly I really suspect – and I am not joking – that he is trying to get a break from me.

“They call me Sir DC the Braaaave”

Posted by TakingItAStepAtATime

“and history someday will rave…….”

DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”, jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

(his name has been muted out of the video)

(A reenactment, of course)

“They call me sir DC, the brave,

and history someday will rave

I’m valiant and daring, and noble of bearing

Courageous and gallant, a mountain of talent.

No wonder folks curtsey and wave

I’m Robin, Sir DC, the brave.”

Later I asked him what movie he remembered that song is from.

The Frog Prince – the Muppet version, of course.

He was brave, very brave. I am happy he is so proud of himself. Hopefully this means that the next time might go much easier.

Now next up…. the MRI……

That should be something!

(video begins at 2:44 – at the song)

Devil Dogs, Root Beer and Memories of the Training School

Posted by TakingItAStepAtATime

I read a blog post recently which brought back some memories for me. The post, a good but sad read, written by Erik Weiner stayed with me for days (read the article here), as it reminded me of my step uncle’s brother, whom I met only once when I was young.

I am guessing that I was about 9 or 10 years old. One day, out of the blue my parents told my brother and I that we would be going out with our aunt and uncle. We had been sent to their house before for babysitting purposes but never for an “outing”.

They came to pick us up and we were told that we were going to take my uncle’s brother out to lunch. I knew my uncle had a sister. She lived right across the street from him and she and her family were there for every holiday. We were around her often enough to also call her Aunt and her husband, Uncle. Never had I heard any mention of a brother.

We pulled up to a very large building, really rows of buildings. My uncle went inside, while we waited in the car with my aunt. She told us that we could not go in because it wasn’t safe for us to be inside. I got a bit worried at that point.

I was and still am a terrible judge of age, but I am guessing that my aunt and uncle were somewhere in their 40’s. Eventually my uncle came out arm-in-arm with a man who seemed to be about the same age. They put him into the car, in the front seat between them. He was very excited to see us, it seemed, very excited – I was still a little bit afraid.

His name was Freddy. I don’t remember hearing him speak, I don’t think that he could. There were a lot of grunts and noises. He seemed so happy to be out and so happy with the Devil Dogs, his brother brought for him. I remember devil dog remnants being everywhere. My uncle was really good with him, which led me to believe that even though I had never heard mention of him and he was really not spoken about (that I knew of), this visit was not random. He was so good with him and prepared so for everything that I had to believe these visits were quite regular.

My aunt explained that Freddy was mentally challenged – of course back then they used different words, and could not take care of himself. This was why he lived at the “school”.

It did not take me long for my fear to subside and to warm up to him. I’m sure, now feeling comfortable and with my interest piqued, I asked far too many questions. I wanted to know what happened, how he got that way, why he didn’t know how to eat, why he couldn’t or didn’t talk. I don’t remember the exact answer I got to those questions, quite possibly because no answer they could give me would have been good enough of an explanation in my mind. It was probably that he was born that way. This was confusing to me. I wanted to know if he lived there all of his life, why I never heard about him, why he didn’t come to family holidays, but was afraid to ask. I think this may have been my first experience with anyone with special needs.

We took Freddy for a drive and then stopped at A&W Root Beer for lunch. He really enjoyed that. A&W was close to the “school” where he lived so after lunch we drove back to bring him home.

I was glad that I has the opportunity to meet him. I really liked him. I am sorry to say that this was the first and last time that I ever saw him and I never heard him mentioned again. I didn’t feel comfortable asking about him but I always think of him when I see a devil dog or see an A&W Root Beer, or read an article like the one mentioned above and every time the “school” is mentioned. This was not residential housing or a group home, it was at the time, an institution, probably one of the few options available at the time. I believe it is still in operation today, whether or not it is still considered an institution, I do not know.

Now that I am an adult, I understand that this is the way things were handled back then. This is where people like Freddy went to live. I also understand, after working in a convalescent home many years ago and from his reaction to us, that it probably wasn’t dangerous in the true sense of the word for us/children to have gone inside. It was probably more like the seniors at the convalescent home, who would get so excited, overly excited and sometimes frighteningly excited to see young children. I could be wrong about this, I have never been inside but that is the way I explained it to myself.

I am happy that I got over my fear quickly enough to enjoy the day with him. I am sorry that times were as they were and parents were told that this was the only option for Freddy and people like him. I don’t know if Freddy ever lived at home, so I won’t say that this was the case with him, but it was the case with many children back in the day.

I can say that Freddy did seem to be very happy and I developed a new appreciation for my uncle after seeing how kind and loving he was with him. I also imagine that Freddy might be the reason that my uncle always remembered DC on his birthday and holidays.

I can also say with certainty that I will never forget Freddy.

Short Stories

Posted by TakingItAStepAtATime

It has been another one of “those” weeks. A “fluff” piece usually goes hand-in-hand with one of “those” weeks (lately, anyway).

Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify for a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though.

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write .Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun. (a few current status’ have been added to the “saved” version before publishing)”

Well, DC got on the bus this morning wearing a 4 inch witch nose – he’s in the spirit!

***

Today the bus driver will be entertained by a flashing Rudolf nose.

***

…… and who thought an electronic mega-phone complete with siren was a good idea for Christmas?

***

I was required to have a conversation on the “banana phone” with the Fairy Godmother before he would eat the banana –

***

“Merry Happy Christmas Eve, Mom”

***

Lesson of the week: Using the phrase “let’s head out” when taking DC to the bookstore, means that “let’s head out” ALWAYS means he’s going to the bookstore #ThingsIShouldKnowByNow

***

Well he’s heard the “T & L “ words on the weather . It is official. There will be NO outdoor activities for us today

***

“Mom, the glasses are bothering you”. (Translation: I bought new cheaters, they are different, he can’t stand it. They are bothering HIM.) But…. he’s not trying to take them off my face as he used to. #Progress

***

DC is shaving – getting ready for the Prom, scaring the life‪ out of me w/ the razor. Finally he turns to me & says “Mom, are you still here?” #IGuessThatsMyCue

***

Doug after sitting through 23 coffee-house acts at DC’s Arc activity. I guess we’ll be skipping this activity the next time around.

‪

****

“Mom, how are you feeling?”
(Me) “I am fine, how are you feeling?”
“I am perfectly ‘nis-able’ ” ~ Even Stevens – Influenza the Musical

***

DC just informed me that he needs to get his “beauty rest”

***

Going to have lunch today with DC at his “job”. He’s excited because he knows he will be able to have a cheeseburger……. Should I be upset that I don’t rate as highly as a cheeseburger?

***

So after I wiped out on my walk with DC today, I asked him “what would you do if mom couldn’t get up?” He answered w/out hesitation “call 911” (after he stopped laughing, of course) #Progress

***

We went to the Ren Faire to see my brother’s show. DC loved it but yelled out in mid-performance “Oh no! *Bill, are you okay?” He was very concerned about the welfare of *Bill and *Uncle ‘Scamp’ and the bed of nails. Although not as concerned about the man actually laying ON the bed of nails…..

***

DC picked up the word “sympathy” from one of his books last night & figured out it means “sorry”. So now he’s “in sympathy” for sneaking chips yesterday

***

DC: “Annette ‘Fun – Tree – O’ in Babes In Toyland, my favorite movie” (Me: Worst Movie Ever …. Seriously ….)

***

We had our IP (The “E” is dropped post-school age) meeting this morning at DC’s program. The first with his new case worker. One of the first sentences out of my normally agreeable son was “I don’t like this stupid meeting!”
1. I’m the Mother so I can not laugh (but I think I may have anyway)
2. I couldn’t agree with him more……

***

It’s a New Years Eve, Eve miracle! DC is eating PASTA!
PASTA! And about 10 meatballs, but…..PASTA!

***

Just because I LOVE this and……. our kids ROCK!

***

I couldn’t have said it better! #DC-isms

***

I was on the phone with an automated system that was not cooperating. DC was making a lot of noise behind me. I told him that he had to be quieter while I was on the phone. I suppose he did not trust himself to keep the noise down because when I turned around, he had applied a Band-Aid over his mouth! Band-Aid 101 – other uses.

***

“Band-aide 101 – other uses” When I told him that his sound machine was too loud; this was the fix he came up with.

Happy Sunday!

***

But then, of course there are the “regular” uses #HeJustLikesBandAids

***

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in band-aids.

***

DC doing his best impersonation of Nick from Top Chef 11 – ‘Don’t Touch my pots!”

***

DC insisted on putting his Dr. Who WINTER hat into his backpack this morning. I asked him why, he wouldn’t or couldn’t tell me. I pointed out that he has a baseball cap in his backpack for the sun. It didn’t matter. So here’s hoping he won’t be walking around the greenhouse on this beautiful, sunny spring day in a T-shirt and a winter hat. #PickYourBattles #WhoviansUnite

***

DC and his Winter Guard Team went to perform at an Ice Cream Social Fundraiser tonight. In the warm-up room before the show, he and his team were lined up getting their last-minute directions from their Director. DC waving/raising his hand during her speech….. “Excuse me! I’m waiting for Ice Cream”.

***

DC presented me with his shopping list for tomorrow. “bandes” – band-aids – and no, he is not sick of butter – he wants butter but in stick form (he doesn’t like the tubs😃)

***

DC woke up in a fabulous mood this morning. “Good Morning Starshine. The earth says hello “ (lol, Charlie and the Chocolate Factory or Hair – take your pick) #DisneylandParis

***

DC and Doug decided to go on “Indiana Jones Temple of Peril” in the rain…. Go figure #DisneylandParis meets #MrNoStormToday . Apparently rain is not as frightening at Disneyland

***

A cape…. Because proper attire is a necessity while watching you-tube (and you never know when you may have to save the world)

***

Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!

***

Book Editing 101 –

Page “Five teen six”

***

“Someone” may have just realized that he might be in a little bit of trouble tonight….

***

DC was having an “issue” tonight at the time his Best Buddy, Steve called to say hello.

Steve understands, but I did tell DC that he was very rude to Steve.

DC went straight into “note-writing” mode and presented me with this note. We did text it right over to Steve.

***

It’s pouring.. POURING! DC was ready at the door wearing his raincoat (Me? No. I wasn’t going outside yet). When the car arrived, he ran out and I stood in the door as always. I saw him flagging we to the car, which he never does. Thinking something was wrong and not wanting to waste time looking for my umbrella, I ran to the car as I was. Opening the door, DC said “Mom! It’s raining! Sorry!” (of course he let me stand there in the pouring rain for a little while before he came out with that) … Happy Tuesday!

*Some names have been changed to protect the innocent

Have a great weekend…..

If wishes were horses……

Posted by TakingItAStepAtATime

Recently and jokingly I made the comment on an Autism-Mom post that my next post would very likely be titled “Bummer Summer” – I was serious about the fact that it has really been a bummer summer, with one thing after another, but really not serious about the post. I really should know by now, never to joke…….

I have mentioned once or twice before that DC attends a summer camp for special needs children and adults. He has attended since he was 5 years old. He loves it there.

Before he left the school system at age 21, he was able to attend every day for 7 weeks each summer. Now that he has a “job” year-round, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. “

DC really enjoys the after-camp program. There are only 10 to 12 campers that attend the program by invitation only – first they have to be old enough and secondly have to be able to tolerate not only being at camp all day from 9 to 3 but staying on after camp until 8pm. That is a long day for many campers. Because it is such a small group, they do try to rotate the invitees for each session. When DC was finally old enough to be invited to stay, I’m guessing at 12 or 13, he was thrilled. At the time, DC enjoyed doing many things but he would always opt to stay home if given the choice. He would never ask to go anywhere. After he attended that first time, he actually asked me when he could go back. That was HUGE!

I am not one to ever ask for favors or special treatment, but he was asking me to go back! I called the director and asked if there was any way that DC could attend once a week, every week. I didn’t want to take anyone’s spot but… this was HUGE! The director at the time, understood (DC had attended camp long enough for her to also know that this was HUGE) and agreed. He attended once a week until he left school and started his job. Now that he is working and not able to attend camp daily, he has been attending the after-camp program twice a week, all summer, every summer.

The after-camp program comes to an end a week before the daily camping season ends. Thursday night was his last after-camp program for this summer. Last week was Christmas week at camp, this week was New Years Eve. He was excited.

At about 5:30 my phone rang. I saw the camp number on the caller ID. My heart stopped. I just knew. DC was having a seizure. *Tam the program director had already called 911. I could tell he was shaken (he really likes DC and the feeling is mutual) but he kept his cool as I was panicking. Camp is a good 1/2 hour away without traffic and he didn’t know what hospital they would be transporting him to because the ambulance had not arrived yet. Doug, who only lives 2 minutes away came and we headed in the direction of camp and the two hospitals closest to camp. Tam called back when the ambulance arrived to let me know which hospital they would be bringing him to.

As luck (seriously someone is watching out for this boy) would have it, a former camp employee, *Kim happened to be there visiting. Kim was DC’s group leader for many years at camp – many, many years. He knows him well. He even worked as an IA (“Para Professional” to some of you) at DC’s transition program at the college. Kim, now a LPN knew exactly what to do. I’m sure Tam would have been able to handle it, we had discussed it after DC’s first seizure, but it is always easier to have that extra pair of hands.

Kim rode in the ambulance with DC. I was in constant contact with Tam, relaying information back and forth. We somehow arrived at the hospital before the ambulance. Kim stayed with us the entire time.

The actual seizure lasted about 3 minutes, but he seemed to come out of it much more quickly this time. He was back to his old self long before we left the hospital.

I know that there are plenty of people who deal with this kind of thing or worse every day, but all of this is very new to me, so yes, I am freaking out, so please bear with me if I bring it up every once in a while. DC has been so healthy all of his life. He’s never been on any kind of medication other than the occasional antibiotics. Now at 24 he has had two seizures in a 7 week period of time. I am having trouble wrapping my head around all of this, while still trying not to make him nervous about it.

Like the last time, DC does not seem to remember the seizure. He thinks he was in the ‘Hos- a- bul’ because he ‘fell down’. After we were discharged, we drove Kim back to his car at camp. Tam and the after-camp staff were still there waiting in the parking lot. Tam had saved some of the New Years pizza DC didn’t get to have for him. This certainly helped to take away some of the sting of missing his last after-camp day.

I am grateful for all of these people. I can’t say enough about the care and compassion they showed DC. If this had to happen again, I am thankful that it happened while he was with staff and volunteers that knew just what to do, didn’t scare him and above all, made him feel comfortable. I can’t say enough about all of them. Tam even thought to send one of DC’s favorite Disney books with him so he had something to read at the hospital.

What does it say about this camp that even former employees love the place so much that they come back to visit ‘their campers’ as often as they can? Once one becomes involved in camp, one is always involved with camp. This place never leaves them. The camp and the campers stay in their hearts forever. This is not just me gushing, this is a fact. Many of the staff started as volunteers when they were 12 or 13 years old, stayed on through high school and through college. Many have become Special Education teachers directly due to their time spent at camp and many continue to work there during the summer. That says a lot about the camp, the campers and the people that love it enough to come back every year for 10, 15, 20 30+ years. Imagine 12 – 15 year old kids, not just a few but 15 or 20 who volunteer to spend their entire summer, every summer working at camp. I am always just blown away by that.

During the course of the evening while listening to all of our conversations, DC realized that he would not be able to attend camp the following day. Our day would be filled with – resting, filling his prescription, calling and possibly seeing the doctor, finding a neurologist and with any luck, getting an appointment.

He was not happy that he would not be going to camp on Friday, not happy at all! He was so angry that on the way home he stated point blank and angrily “Never falling down again!”

If wishes were horses……

*******

**Names changed

Soda or Water?

Posted by TakingItAStepAtATime

We never have soda at home. I don’t buy it unless I am having people over. I do buy sparkling water for myself, but not soda. Even though I do not buy soda, DC seems to drink more soda than the average person. We do go out to eat often and I usually do let him get soda in the restaurant. The problem; they seem to just grab his glass and refill it so quickly that before I even realize, he has had 3 large glasses of soda in one sitting – he drinks it that fast. Add that to the parties, picnics and other events or activities where soda is always available…….. and he has been drinking far too much soda.

As you may or may not know, DC had a seizure over a month ago. It took a ridiculous amount of time, in my opinion to get his EEG scheduled and more of a ridiculous amount of time waiting for the results. While doing all of this waiting for the tests and the results of said tests, I had convinced myself that the severe heat on that day was partially, if not entirely the cause of this seizure.

Well the results are in. CAT Scan – Clear (we did already know that from the ER), Blood work – Clear, EEG – Clear. I am told that all this means is that there was no seizure activity at the time of the EEG, which of course does not mean he will not have another, but it also does not mean he will have another……. Ba Dum Bump…. I believe I am now in the exact place I was when all of this started. Don’t you just love that?

Moving forward and armed with this wealth of information <sarcasm>, I am still of the mind, that this seizure was due to the heat combined with the stress of the rest of the day. I have stressed to everyone concerned how important it is to keep him hydrated, especially because he works outside and in a greenhouse. He has never been a big water drinker. I do give him water all of the time but unless he drinks it standing right in front of me, I never know if he’s actually drinking it or drinking enough.

I had already put the kibosh on soda when he has hot lunch at work a while back and I am happy to say that he has been following that rule. He is ordering it AND actually drinking it. Ordering coke has become habit to him when we are out so I really thought this transition would be difficult and I really wasn’t sure he would follow through when I wasn’t with him.

I have noticed that the last few times when he has been out with me, he has ordered water instead of soda without hesitation and without looking to me to remind him first.

A few weeks back when I went to pick him and his friend up from a camp activity where I know they have soda with their dinner, the program director and the other staff told me that they were all shocked that DC insisted on having water with his dinner!

If nothing else, I have successfully eliminated soda from his diet and so much more easily than I ever imagined. Now if this would only work for his cheeseburger (another item I do not buy for home) obsession, we would be golden……

Summer Reruns – Doug’s 155th Birthday and Yes, Mrs H is still jealous

Posted by TakingItAStepAtATime

In honor of Doug’s 155th Birthday tomorrow and Mrs. H’s birthday the other day, I am rerunning a post from Doug’s 153rd Birthday (we won’t be giving away Mrs. H’s age though)…

DC Speaks, Doug’s 153rd Birthday and why is Mrs. H so jealous?

DC has his own Facebook and Instagram accounts. Instagram is private and I only accept people I absolutely know to follow him. 90% of the photos on this account are photos taken of him by me. The photos and videos he has taken himself are pages from whatever book he may be reading, food, princesses from either books or the computer screen and videos of YouTube videos of Cinderella dancing (spinning mostly) or other characters spinning. There’s a lot of spinning.

I set up the account for him because he enjoys looking at photos so much. Apparently he enjoys looking at them much more than he enjoys taking them. His facebook is set for friends only. He is not allowed to write anything unless he asks permission first and then I stand there while he writes whatever it is he wants to write. He is not allowed to accept friend requests until I can figure out who the requester is. He does not post his own photos. I’m sure he could, but his friends will be inundated with photos of Judy Garland, Amy Adams, princesses and Disney characters.

He does go on Facebook on his phone to look at pictures of his friends. He is allowed to do that. So far – and it had been 4 years, he has followed all of these rules. I check his phone and his account daily. Lately he is starting to lose interest in typing a status. He does not like to type to begin with and I really was hoping that this would help him get used to typing or to even start to like typing – it didn’t. He still, every once in a while will ask to write something or I will sometimes take a photo and ask him to write what we are doing, but not as often as before. He still does go on everyday to look at pictures though and as I said, he will still post a status or two.

I was thinking about DC’s past status updates and decided to go through and pull out some of my favorites. (Translations and/or explanations are in parentheses – a few names have been edited – other than that, nothing has been changed or corrected) So, in no particular order, DC speaks…….

-We Going to Anthony.s for Thanksgiving Dinner i want Tuckey Legs

– i Hate Snow

– i hate Snow . i like going to Work with Mom

– i Hate Snow

(I think he might not like snow very much)

– The Lights is On

– we Had Fun at Halloween Party. i am Happy. Be Brave For No Storm

(worrying about losing power)

– i am so Happy is Halloween

– we going to sleepy Hollow with ‘BB’ and and mom and doug i am so exciting

– i Like the Movies Trouble with The Curves

– i going to Dad.s wedding I am looking handsome

– going to grandmother. s and have some muffins

(“grandmother’s” – from Disney and other books)

– Happt collation

(Graduation)

– luau day like lilo

(Luau day at camp – the only thing he can relate it to is Lilo and Stitch, because Everything is related)

– last day of camp was yestrday. i had a fun. i am going to grandmother.s today. a very merry unBirthday

– I went to hospital todat

(See post about first time in Emergency Room)

– i am tired. i went to grandmas i went to winter guard show i did a good job i went to dinner with mom and doug and mom; s freind suzanne and her frien. i dance to wing it i am going to sleep now where has the time gone

– i ate alligator in new Orleans

– We having fun in Florida mrs h will be so jealos

(“Mrs. H. will be so Jealous” – there are quite a few of these. I did not include them all only because I could not find them all. Mrs. H. being jealous began 3 years ago when DC was in his last season of Challengers baseball and DC’s team was invited to Fenway Park for Challengers Day – All Kids Can. Mrs. H. had mentioned that her husband, Mr. H. was so jealous because he would have loved to go to Fenway. I don’t think DC really understood what “jealous” meant at the time, but he did know that he was doing something that Mr. H. wanted to do. Somewhere along the way Mr. H. being jealous evolved into Mrs. H. and it just went from there. I know as does she, that he thinks jealousy is a good thing.

– I had turkey leg and turkey wing and bread. with mom and uncle smap and aunt lisa. I like pie. we going to lunch with uncle ted later after that.

– I want a turkey leg today

– phew. I work at theater. we went to the ball. we ate dinner with uncle scamp and aunt lisa. we went to camp Halloween party.

– We going to mountain of oz on Saturday. We taking the airplane tomorrow have to get some rest. I will see my family. We going to dilly wood tomorrow if it does not rain have some fun

– I had fun time. Not New York City. Next week we going to New York City. Lots of food and book store

– Thank you thank you mrs .H happy happy Easter I love jelly beans too

– I am happy to have my birthday Today is my birthday,

– Mrs H will Be Jelous

(I don’t recall what she was so jealous about this time. That was all there was to the post)

– I love jellybeans too

– Have a Thanksgiving day. I don.t have work. i will have dinner With My Family. me and mom doug uncle scamp Aunt Lisa Erica I want turkey Leg

– Mom fell down blood over her I did not take picture she is ok

(we were out walking our CharityMiles)

– I did good work at the theater to day I liked the dream girls show. I m not tired

– Happy Birthday to all and to all a Good Wishes Happy birthday DC Tha;ts me

(It was his birthday. I think he was actually thanking people for the Birthday posts on his page)