Choosing my battles……..

Posted by TakingItAStepAtATime

We went away this weekend to NYC and Sleepy Hollow. We try to take a Halloween Weekend every year to somewhere either “Halloweenish”, Spooky, Historical or where costumes are involved. We will be going to a ComicCon the weekend after Halloween (that counts) so we decided to do just a quick overnight to Sleepy Hollow this weekend. Our usual Halloween destination is Salem MA, but we’ve switched it up the past couple of years mainly due to the fact that Doug is <insert colorful metaphors> of going to Salem – I, on the other hand, never tire of it.

We had already done a weekend in Sleepy Hollow a couple of years back. We did just about everything there was to do with the exception of the BLAZE. I did not know that in order to do anything in Sleepy Hollow in October, tickets must be purchased on-line ahead of time. Fortunately, once I discovered this and by the skin if my teeth, I was able to get tickets for everything else.

This year we thought ahead and got tickets for the BLAZE early. Since that was all we were going to do in Sleepy Hollow, we decided to first spend the day in New York City (DC’s favorite place), check into our room in Sleepy Hollow and go to the BLAZE at 9:30 PM (the only time available when we purchased the tickets).

I had not been feeling well all week and would have opted to skip the whole thing and stay home on the couch, but DC had already been told about the trip and he already added it to the calendar so that meant it was engraved in stone.

Knowing his propensity to over-pack DVD’s for the sole purpose of stacking them next to him while he watches YouTube on his computer, and knowing full well there would be a visit to a bookstore at some point during the trip, I told him that he could only bring 5 DVD’s and 2 books. I said it more than once. I just didn’t want to have to keep track of a bunch of unnecessary stuff and try to carry a bunch of unnecessary stuff. I just wanted to pack light and get this over with. (I did forget my jacket in the room, so I really couldn’t manage to keep track of the necessary stuff – turns out, they don’t ship forgotten things. We have to go back and get it).

5 DVD’s and 2 books.

“Okay Mom!”

He went about packing his laptop, his DVD’s, his books, and pens to edit said books.

“DC, how many DVD’s did you pack?”

“5 DVD’s – 2 books”

“Are you sure?”

“Yes, I promise”

When I went to grab the charger for his phone, I found that he already packed that as well. I found THAT to be a bit impressive. He is usually only concerned with his books, DVD’s and laptop.

I told him how proud I was that he remembered his charger by himself. He took that compliment and added that “I am proud of the 5 DVD’s and 2 books” – he was just pointing out the fact that I forgot to tell him in that sentence that I was proud that he followed the rules.

We spent the day in New York City. We visited all of his favorite places and headed out for Sleepy Hollow about 3 pm. All I wanted to do was sleep for a little while before dinner and the Blaze. In the room I was just telling Doug what a great job DC did packing only what I told him to and remembering his charger, when I noticed a good 15 to 20 DVD’s sitting next to his laptop. Now, this has been an issue before and the celebration over him being sneaky and figuring out that he could just hide them is long over with. I do have to give him props for figuring out if he packed his own charger there would be no reason for me to go into his backpack (a new level of sneakiness), but like Tonya in ‘All the …..small things’, I have to be the mother, even though I knew full well what would be in store for me after reprimanding him.

As soon as he realized that I noticed just how many DVD’s he had with him, it started…..

“I am sorry Mom. I will never lie again!”

“I am so sorry, Mother!”

DC only gets to use his laptop and DVDs on the weekends. That has been the rule for many years. Losing his computer privileges is the only thing that EVER makes any kind of impression on him.

“DC, you lied to me again. I told you the last time you lied to me that you only had one more chance before your lost your computer for the weekend. This was your last chance, so no computer for the weekend.”

(Seriously, as punishments go, this is really not much of one. It was all ready Saturday night. We would be going out soon and we were leaving the hotel the next morning, but this did not matter to him).

Now, 2 inches from my face……

“I promise to never tell a lie again”

“Mom, I’m sorry!” – those of you that know DC, you know that:

He is sorry for absolutely everything! Partially he believes “I’m sorry” will get him out of anything. Like a typical man, he thinks that saying “I’m sorry” even if he doesn’t know what he’s sorry about will get him out of anything or at least get me to stop talking. If he really wants to bring it home, he goes to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He’ll even throw in a “Can you ever forgive me?” (movie line), if he thinks it’s necessary.

He says he’s sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he’s covered, he already said he was sorry. Or he’ll say he’s sorry when he’s about to do something he knows he’s not supposed to do. He’s covered, he said he was sorry!

I heard this and variations of this throughout the evening all recited 2 inches from my face. I won’t go into the amount of times I explained to him that just because he promises not to do it again does not get him out of the punishment he was already given. I understood that he was sorry and I was proud of him for being sorry…… believe me, it was covered and covered.

*****

We did enjoy the Blaze –

but every few minutes he reverted back into his “I’m sorry” campaign.

Back in the room, he changed his tactic.

“Mom, thank you for much for the trip”

“Mom, thank you so much for the dolls”

“Mom, you are my queen.”

“I love you Mademoiselle”

“I am being so good!”

I did explain to him as I always do that I never would think or say that he was “bad” – he is not bad; he just did something wrong – on purpose.

We went to sleep (remember, I am still not feeling well). 4 or 5 times during the night, I woke up to find this boy 3 inches from my face telling me that he has “Good Behavior” and “I promise never to lie again”

There are times when DC really does not understand what he has done wrong and I will speak with him and try to get him to understand – this was not one of those times. He knew exactly what he was doing while he was doing it. I can not just let everything go, even though at this point I really wanted to get some sleep. If I gave in now he’d know that I would give in the next time.

Morning came.

He hadn’t packed any paper to bring on the trip so he resorted to writing me apology notes on the inside of his books.

As many times as he brought it up, there was an explanation for him. I love him, I always love him. I was not happy with the choice that he made to lie and sneak but I am not angry at him. If he does not do it again he would not lose his computer again.

We left the hotel, looked around Sleepy Hollow a bit, had lunch and headed home.

Monday was a holiday but the weekend was over, which meant his punishment was over. He double checked that fact with me and was extremely happy to hear that he was correct in his assumption. We were home all day on Monday and he was quite happy not to use his computer, because Monday is not “the weekend”. But he knew it was ON for the following Friday and I never heard another word about it.

(He understands the word “punishment” from Full House. I originally never used that word – that was all him)

“No Jim Dear”…. (shhhh… it just may be)

Posted by TakingItAStepAtATime

In an earlier post I wrote about the “Jim Dear” derby hat and how after many years of asking to be “Jim Dear” for Halloween, he decided against it – after I had purchased the hat and picked out a few steampunk suit options to surprise him.

Last night we attended the 50th Anniversary Gala for the summer camp that DC attends. DC loves to wear a suit so he was all for it.
After running up the stairs a good 3 to 4 times to “look in the mirror” and admire his handsome self – he came down wearing the “Jim Dear” Hat!

hmmmm…

He ran back up to look in the mirror a few more times and returned with a moustache request. Much like his beloved Band-Aids, stick-on moustaches are another staple in our household.

I tried to talk him out of it but he insisted.

hmmmmm..

All-righty then, the moustache, it is! I was hoping that he would decide to take it off before we arrived at the party.

He did not.

He wore it a good long time. He received many compliments on his moustache and was very happy with the attention. When we were still at home, he would not tell me who he was supposed to be but as soon as someone at the party asked him if his name was Charlie (Chaplin); he promptly corrected them “No, Jim Dear!”

with Grandma

He did eventually take it off when it started to get itchy more than halfway through the event.

It is October.

He wore the hat.

He added the moustache.

Jim Dear?……………..Yes, this year.

I guess it just had to be his idea.

Good enough for me.

I will take it!

A Conversation – “The Training School” revisited

Posted by TakingItAStepAtATime

Recently I wrote a post about a training school. I was a little apprehensive about writing the post because I know my friend Beth has had to place her son in a residential program for behavioral issues and safety. I know that there is a difference between an Institution (as the one in the late 60’s, described in the post) a Group Home and a Residential Program. I know she is trying to do what is best for her son and her family. I also know that she has to endure quite a lot of abuse from other parents about having to place her son in the program. Many treat her as though she is institutionalizing him or locking him away. This is hardly the case. She is trying to do what is best for her child with the minimal supports that are open to her in the rural area where she and her family live.

I know that this is not the situation she was hoping for, but in order to help her son and her family this was the only real choice that she had. She wanted to get the proper help for her son that they could not – try as they might – provide for him. She wants what every parent wants, a chance at a better life for him. This was not a decision she was happy about making, believe me – but she believes that this program is what is best for her son and her family right now. At this moment he needs more help than they can provide at home or in school.

I know that we can not judge other people’s children based on what we know about our own child’s Autism. To use the phrase once again – (I have used it plenty and I wish I knew where it originated) “If you meet one person with Autism, you have met one person with Autism.”

Beth and I had a conversation after I published that piece. Although I understand where she is coming from, she knows full well that many people do not. She agreed to let me use our conversation in the hopes that it may help people understand her situation. It was difficult enough for her family to have to make this decision without enduring the added pressure of other’s opinions.

Beth: “Unfortunately, it is still the only option for many parents to have their kids live elsewhere. If it wasn’t for my son’s aggression and property destruction, he would be living at home.

If there were better supports for people with disabilities to be able to stay in their homes and communities we would not need places like group homes and residential schools. The difference from back then <the time frame from the post> and now is probably the ‘reason’ for the placement. Now, it is usually a last resort after trying to support the person at home or because their needs are many and too complex to be supported at home.

Many people do not make the distinction from the training school/institution that you wrote about to the program my son is in. I have had so many other parents tell me they would never do “that” to their child. There are some horrible group homes and residential programs, not much different than an institution, just in a different location and given another name. There still needs to be a lot of change in providing better public school programs and home supports. We still have a long way to go in properly supporting disabled people in their homes and community. If that were happening we would not have had to outplace him like this”.

Me: Believe me, you were on my mind while I was writing it. You haven’t ‘done” anything to your child, you are doing what you hope is best for him and your family; because the rest of your family should matter as well. I agree, that people still do not make the distinction and there IS a difference, I know that. I wish more people did. I absolutely agree that there should be more home supports and school supports in place even if you do not live where it is convenient for people to get to. I would like to use this conversation in a post. I think the distinction needs to be made and can be made better by someone in your situation.

Beth: “That would be fine. I am doing my best to DE stigmatize the placing of a child in a residential school or group home. That is why I share our experience on Instagram. Too many people live in dangerous and unhealthy situations with their disabled loved one because they fear what will happen when they place them.”

Beth lives in a rural area where the school system could not provide the support that her son needed. They could not get or keep support in the home due to the distance many of the support people would have to travel. Many people are not in the position to pack up and move into an area with better supports in place. They visit him quite often. She is in constant contact with the staff and her son. He comes home for visits as often and for as long as he can handle. The goal here is to get him the help that he needs so he will be able to come home for good one day. To help him manage his anxiety and aggression so that he can come home.

They want him to come home…..

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.

“Jim Dear?” – Not this year….

Posted by TakingItAStepAtATime

So Halloween is upon us. It is already September and we are a little bit behind schedule this year. We usually have our costumes chosen and purchased in August. We did pick out our “official” Halloween night costumes way back in April or May so we are not 100% behind, but we are still behind. There are plenty of parties to attend for which DC must have different costumes (gotta love this boy!).

Okay maybe we like Halloween just a little teeny tiny bit -but we’re not obsessed or anything….

Last week we discussed what party costumes he wanted to wear this ‘Holiday’ season. This is always a little bit of a challenge. At times the costumes that DC requests are just people that he likes who happen to be wearing regular everyday clothing, or it is an obscure character that nobody knows but him (he might get that from me). Most of the time there is no such costume available so my mission is to come up with something or make up something that at least in his mind, makes the point.

The one costume that continues to make the list from the time DC was very young is “Jim Dear” from Lady and the Tramp.

(sigh….) A man in a suit…..

Not my idea of a Halloween costume, but – this is not about me….

……not ALL about be, anyway.

But, this year I was prepared.

Last October we attended a fundraiser/gala with Tony Orlando. The gala had a 1940’s theme. It was not a costume party, it was a theme, but in keeping with DC’s love of costumes, I bought him a 40’s style hat to wear with his suit. There was also the added incentive to get him excited about going to the event of calling the hat and suit a costume. While I was shopping for said hat, I came across a derby style hat that closely resembles the hat that “Jim Dear” wears. I purchased that to save for this year.

While looking for items to make a “Timekeeper – Spy Kids – All The Time in the World” (yes, we must use the proper and entire title) costume last year I came across a tremendous amount of steampunk costumes. I discovered them too late for last years’ costumes (they had already been chosen and we can’t mess around with the costume line-up) but I knew that they would be a great option for this year.

2015 would finally be the year of “Jim Dear”.

I had everything ready when we sat down to choose his costumes. I had a choice of two suits up on the screen, I had a few options for “Lady” stuffed animals for him to carry. I even found a “Tramp”…. and I had the hat. I was excited because I knew that he would be so excited when he saw that one of his costumes would be “Jim Dear”. I saved the surprise costume for last.

He chose a Disney Character – surprise! He also chose a character from a television show – whoo hoo! – a current television show – bigger whoo hoo! When we had only one more to pick, I started to wonder why he hadn’t yet brought up “Jim Dear”. I thought he may have been so overwhelmed by looking at all of the other costumes that it had just slipped his mind, so I opened up the windows that I had saved, expecting him to be over the moon….

He said “No! No, Jim Dear!”

What ?!?

“No, Jim Dear!”

I asked him again just to be sure he was not confused, I showed him the hat that I already bought. I showed him the photos of the suits and stuffed animals – “NO! Jim Dear!”

sigh…….

Anyone in need of a black derby hat complete with decorative feather?

– in great condition – never been worn….

“Funny Friday” Night

Posted by TakingItAStepAtATime

Jokes…… not really a concept that DC understands most of the time. There are things that he finds funny when he is watching a movie or reading a book and physical comedy, of course is very funny to him – but to tell a joke and understand why it is funny is not always in his realm of understanding. He is very literal and jokes are oftentimes very abstract. Not to say that he does not spend a good part of his time laughing – he does. I rarely know what he is laughing at and he, for the most part can not explain just what is so funny. It is just the things that are going on in his head.

There are times when he does surprise me…

As I am sitting here listening to him laugh at a scene from “The Big Comfy Couch” on YouTube – the same scene over and over and over again – and I am reminded of a time that he not only surprised me but his teachers as well.

Below is a post from two years ago about a that day. Since we seem to be having a funny Friday night here (over and over and over again), I decided it was as good a time as any to re-post……

******

“Funny Friday”

For the two years after “Graduation” DC attended a transition program through the school system at a local college.

I was visiting the school for a class event, one Friday afternoon and his teacher, “Mr. Disney” (as DC calls him) excitedly came over to me and asked “Did you help him with his jokes today?” Not knowing what he was talking about, I said “No, what jokes?” One of the IA’s (“Para’s” to some of you) chimed in to tell me that he had told 3 jokes for “Funny Friday” that morning.

Mr. Disney went on to tell me that every Friday is “Funny Friday” and all of the students tell their favorite jokes at the morning meeting.

Okay…. Let’s pause here for a moment……

I don’t know how long (or if ever) it will take before anyone will understand that HE IS NOT GOING TO COME HOME AND TELL ME THESE THINGS! If someone else does not tell me, I am not going to know. If I had known about “Funny Friday” I would have helped him with some jokes, but unfortunately I was never told.

I was surprised that he actually TOLD a joke because DC’s idea of a joke – and it’s always the same – is:

“Ha, Ha, Ha! Funny Joke!”

Me: “What’s the joke, Bud?”

“Monster!”

(Insert “cricket” sound here – that is it)

They proceeded to tell me the jokes he told that morning. He told them properly complete with a bow and…. they were actually funny – real jokes!

“Why did Bo Peep pour chocolate on her sheep?”

“She wanted a chocolate BAAAAAAAAR”

“Why can’t Cinderella play Soccer?”

“Because she ran away from the ball”

“What do they call a Fairy that doesn’t take a bath for a month?”

“Stinker-Bell”

He told honest – to – goodness JOKES! After years of “Monster”, he actually told, not one joke, but three and UNDERSTOOD why they were funny!

Later, I ran into the Interim Dean of Health Sciences, of the college who couldn’t wait to tell me about the three jokes that DC shared that morning. Everyone was very impressed, to say the least!

Still I had no idea where he found these jokes.

About a week later, “Mr. Disney” finally got DC to tell him where he found his material.

Actually, he showed him……

After asking him all week, DC went to the computer, typed “Disney jokes” in the search engine and found a web-site full of Disney jokes.

He memorized them and had them ready for “Funny Friday”!

He was able to figure out on his own that “Monster” wasn’t cutting it for “Funny Friday” and he needed better jokes. He went about finding them himself, remembered them and had them ready for Friday!

“Monster” ?? Still his favorite joke.

(Graduation – I do not know what it is like everywhere else, but here school-age for SPED is 3 to 21 years. DC “graduated” from the High School after spending 4 years there. Having two years left of school, after his senior year – the options were to let him stay at the High School or to have him outplaced into an appropriate transition program. Fortunately the town put together this transition program right before DC was ready to graduate.)

No No No….. “Green” Peanut Butter Only!

Posted by TakingItAStepAtATime

The other day Doug called before he came over; he was stopping at the grocery store and asked if I needed anything. I do not like going to this particular grocery store and avoid it all costs…. but it is unfortunately the only store that I can find that sells Teddie Peanut Butter – All Natural – No Salt Added. Now there are plenty of places that sell Teddie All Natural, but the “no salt added” is not easy to find. At one point in time, I was ordering it on line directly from Teddie. Since he was offering, I asked him to pick up a few jars.

He brought them over and put them on the Peanut Butter shelf, upside-down in the cabinet. DC was relieved because he had already told me many times that day that we were out of Peanut Butter – many times… so many times that I was sure I would be presented with one of his shopping lists at some point during the day.

The following morning he asked for the peanut butter. He already had his bagel toasting when I opened one of the new jars and saw that it was chunky – Super Chunky to be specific.

All together now…….

OH NO!

He saw it and I saw that look of panic come over his face immediately. I pulled out another jar – Super Chunky as well! Only one more jar to go…….. it was creamy! PHEW! Breakfast was saved!

I really do not know why he will not eat chunky. He loves peanut butter, he’ll eat peanuts – but he will not eat chunky peanut butter.

I remember once, back when DC was probably six years old, when peanut butter was the only thing he would eat for lunch. I went to make him a peanut butter sandwich and discovered that I had mistakenly bought chunky peanut butter. At this point, he had never had chunky so I decided that I would give it a try. I thought since his love for peanut butter is second only to my own that he would get past the chunks and eventually eat it.

DC was non-verbal at the time and just kept signing “No” and “Green”. I had no idea in the world what he was trying to tell me. He then proceeded to pick every piece of peanut out of his sandwich, all the while signing “green”. Removing the peanuts did not really work all that well, but it did make a huge mess – so don’t try this at home.

… and I never did figure out what “green” meant that day.

When we went grocery shopping the next day, I had completely forgotten about “green” and what it may have meant. While we were in the peanut butter aisle, DC again started signing “green”. Finally, apparently disgusted with me, he reached for the peanut butter (this was back in our “Skippy” or “Jiff” days). It was only then that I realized that the creamy had a green cap, while the chunky was blue.

How had he noticed that when I never had? He didn’t speak and honestly never seemed to be paying attention to most of what was going on around him if it was not directed specifically towards him. Apparently he was paying attention to so much more than I was giving him credit for at the time, and he was/is definitely serious about his peanut butter.

A chip off the old block…

“I am so proud of ME!!!”

Posted by TakingItAStepAtATime

I promise that you all will not have to read about every single test DC has to take but this one was a huge accomplishment for him – HUGE!

A year ago…. even a couple of months ago, I would never have attempted an MRI with out the benefit of sedation (his, but these days it might be beneficial for me too 🙂 ). Never! It just would not even have been a consideration.

He has been through so many appointments and tests lately that I was really hoping that he was just getting used to it and maybe, possibly he would be able to cooperate. I mean he had blood drawn – that was major. Even the EEG was quite the accomplishment for him. Knowing now just how long all of these tests take to schedule to begin with, I did not want to wait the extra week or two or three for an appointment to sedate.

I talked to him about it the entire week before the test. I showed him pictures, I showed him videos. I explained that he had to do nothing else but stay still. There was nothing that was going to hurt or pinch. They were going to take pictures of his head while he was inside the machine. I have only had one MRI myself, for my arm/shoulder. It wasn’t fun but it only took about 20 minutes, so I was hoping that after all he had already been through he would be able to manage it.

We arrived at the hospital in the morning. Grandma and DC read a book while I filled out pages of paperwork. He did not seem nervous at all.

He started getting anxious as soon as the nurse came to say that they would be calling him in shortly. Lisa, our “guide” for the test, came to get us. We went into another room to answer more questions. DC was now moving into “close to extreme anxiety mode” and I am sure that Lisa was now concerned that he was not going to be able to do this. This is when she told me that there would be an IV involved………

Lovely – now I am a big fat liar. No one told me about this. I never had any sort of IV when I had my MRI. Maybe I was supposed to know this but seriously, up until a few months ago neither DC or I have never really ever had to have any kind of tests like this so I really had no idea. Of course I have had blood work and the one MRI and maybe an x-ray or two , but other than that there has been nothing for either of us.

Just so DC would not think I had lied to him and because whatever the consequences, I always tell him the truth and what is going to happen – I explained that he would have to have an IV in his arm, not like the needle they used when they took blood but just a little poke like when he was in the ambulance. I told him that I was sorry I didn’t tell him before but I didn’t know. No one told me. He seemed all right with that explanation but I could see he was getting even more nervous. She told me that they would take pictures for 30 minutes, bring him out to give him the IV for the last 10 minutes of the MRI.

40 MINUTES!!!! Now I was absolutely sure we were done. I was positive this was not going to work. She told me the worse case scenario if he tried and just could not stay still that long would be “conscious sedation”, but…. we would have to make a new appointment and come back another day.

Thankfully, he did not have to change out of his clothes because that would just be something else for him to obsess about. He did have to remove his glasses – not happy. I was able to go into the room with him and hold his hand. It was torture standing there watching him. He had a difficult time staying still, but he was still enough through enough of the test that they were able to get what they needed. At one point I did make them stop and take him out. I could see he was getting more and more agitated. I didn’t want him to get to the point where he would not go back in. They attached a mirror to the helmet/bracket that was holding his head in place so that he could see me. That seemed to help a great deal. He was able to go back in and finish the first 30 minutes.

They brought him out for the IV. This was a bit difficult. He of course got very anxious and was struggling. I laid across his free arm and the two techs held his other arm. They managed to get the IV in and just when I thought we were free and clear, they determined that it wasn’t working. They had to do it again, this time in his hand. I think the tech was more upset than I was about having to stick him again.

DC and I sang a few rounds of “They Call Me Sir DC the Brave” (luckily I had learned the words from the last test) all the while thinking that this was definitely the end of the road. He was not going to stand for this. They managed to get the IV in before he even noticed and he was good to go. He did give us a few fake “Ouch” Ouches when he realized it was already in – just for good measure.

Amazingly enough he finished the last 10 minutes and it was over. He was so happy and proud of himself.

After he got his glasses back “I can see, I can see!” – our first order of business was to take this brave guy for wings – correction…. our first order of business was to cut off the hospital wrist band. We can not wear that a second longer than necessary.

On our way to the restaurant I gave him the phone so he could call Doug. In his loudest – highest pitched voice, he screamed into the phone “I did it, I did it! I am so proud of me!!!!”

He continued to yell with excitement during lunch and all of the way home where he fell asleep immediately after telling me “I am not tired!”

A few days later he received a Certificate of Bravery in the mail from his aunt. She was proud of him too and he was thrilled. There is nothing DC loves more than to have everyone to tell him over and over again just how proud they are of him!

But seriously, I could not be prouder of him. This guy never ceases to amaze me…….

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.