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.

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.