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.
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…….
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.
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!
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. 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.
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.
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.
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” as if nothing happened – 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.
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.
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.
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!
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)
“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
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.
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!”
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!
<Insert happy dance>
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……
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.
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.
Taking it a Step at a Time 
