“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…….

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

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Things I have learned since DC’s seizures began:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“They call me Sir DC the Braaaave”

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“and history someday will rave…….”

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

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

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

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

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

Let the battle begin.

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

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

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

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

(his name has been muted out of the video)

(A reenactment, of course)

“They call me sir DC, the brave,

and history someday will rave

I’m valiant and daring, and noble of bearing

Courageous and gallant, a mountain of talent.

No wonder folks curtsey and wave

I’m Robin, Sir DC, the brave.”

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

The Frog Prince – the Muppet version, of course.

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

Now next up…. the MRI……

That should be something!

(video begins at 2:44 – at the song)

If wishes were horses……

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

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

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

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

DC really enjoys the after-camp program. There are only 10 to 12 campers that attend the program by invitation only –  first they have to be old enough and secondly have to be able to tolerate not only being at camp all day from 9 to 3 but staying on after camp until 8pm. That is a long day for many campers. Because it is such a small group, they do try to rotate the invitees for each session. When DC was finally old enough to be invited to stay, I’m guessing at 12 or 13, he was thrilled. At the time, DC enjoyed doing many things but he would always opt to stay home if given the choice. He would never askto 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. Tamand the after-camp staff were still there waiting in the parking lot. Tam had saved some of the New Years pizza DC didn’t get to have for him. This certainly helped to take away some of the sting of missing his last after-camp day.

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

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

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

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

If wishes were horses……

*******

**Names changed

In an effort not to drive my son off the deep end…..

…..and in an effort to keep myself occupied, I am writing.


DC had a seizure last night. He is 24 years old and has never had a seizure. Other than the time he got an ear bud from his headphones stuck in his ear, he has never been to the Emergency Room or hospital. He has never been on any medication of any kind with the exception of antibiotics every once in a while.

Now that we are home, I don’t know what to do with myself. All I have done since we left the hospital is watch every move he makes and pace. I jump when he makes a noise, I jump when he’s too quiet. I am trying (but not succeeding) not to frighten him. Instead of sitting there and staring at him, which I know is making him nervous – I decided to sit and write so at least to him I am not focused on every move he makes (I am, but he is less inclined to notice). I have bothered as many friends as I possibly could already, so now I have nothing to do with myself than stare at him while trying not to frighten him and pace.

I had no intention of writing about this and I am not even sure that I will post it when I’m finished but I am finding it is helping me to talk about it, so for DC’s sake and my own – and before I make him fear ever leaving the couch again, talk and write is what I am going to do.

Yesterday we participated in a Bike-A-Thon for DC’s old baseball league, The Challenger Division of Little League. He aged out when he was 21 so he no longer plays but we had been involved since he was 5 and we hoped to see some old friends there, so we decided to sign up. We live in a duplex and right before we were ready to leave, my neighbor came out and said she was having a problem with water backing up into her basement. There was nothing we could do for her as it seemed to be a bigger problem than just a clogged drain so we suggested she call the landlord.

It was a hot day, but DC did well on his bike. We were home by 10/1030. When we arrived home the landlord asked us to use as little water as possible until they could figure out what was wrong. Later she came and said they had to call someone on MONDAY to look at it, but we could not use the water as everything was backing up into the neighbor’s garage. Great! We had just come back from a hot and sweaty bike event and now we could not use the shower or the bathroom. I thought about it for a while and decided we would check into a hotel that was close-by for the night and bring DC home in the morning in time for his transportation to work.


DC was not happy about this. He was looking forward to staying home on his computer. I was a bit surprised because he usually loves going to a hotel and we always bring his computer. He was happier once I told him we could go out to dinner.

Fortunately Doug decided to go with us. We checked into the hotel, dropped our bags in the room and went down to the restaurant for dinner. DC showed no signs that anything was wrong. He was acting his normal self all through dinner and when we left the restaurant. Between the restaurant and the elevator, which is only a distance of about 20 feet, I heard this odd noise coming from DC. I looked at him and for a split second thought he saw someone or something in the lobby that he was excited about and that he was making his normal “DC noise” but I quickly realized that this sound was different, a low roar that sounded like it was coming from his throat. I noticed his head was cocked to the side and his face was twisted. I panicked and yelled “What is wrong?”. His whole body began to convulse at which point I began screaming. Doug who works with Special Needs Adults and had just completed “seizure training” recognized what was happening right away. I don’t know if I guided him to the floor or if he started going down and I caught him, I don’t remember. Doug says I guided him to the floor. He continued to thrash and seize on the floor. Suddenly we were surrounded by hotel staff – I don’t even know where they came from and how they got there so quickly, but they had someone counting down, and another came with oxygen. I tried to keep myself together so as not to scare him and I did for the most part until we were getting into the ambulance and I called his Dad. It wasn’t until I said the word out-loud that I started to really lose it. I know someone had been counting down, but I don’t know how long he seized – it was an eternity in my mind. Doug thinks it was about 3 or 4 minutes and it was another 20 minutes or so until he seemed to be fully aware of his surroundings.

By the time we got to the hospital, around 900PM he was talking again. I could see that he still wasn’t himself. He let them put an IV in, which as I’m sure I’ve mentioned before would never have happened if he was not so wiped out by what had just happened. When I have to take him for a regular shot at the DR’s office, I have to bring Doug and his Dad as back up. Doug followed the ambulance, his Dad arrived about 45 minutes later and then my mother arrived. We had a full house but DC was glad to have everyone there with him.  We were there until 2:30 AM. He had blood work and a CAT scan. All of which came back normal. They recommended that we see his regular doctor and that she order/schedule and EEG.

We went back to the hotel because we couldn’t go home and DC slept very well. I called my landlord in the morning and the water issue had been taken care of – we were able to come home.
I will never forget that sound and his face when the seizure started for as long as I live. I am aware that seizures often accompany autism. I worried a lot about this when he was younger but once he was 13 or 14, when they usually rear their ugly head, I felt relieved and at this point a seizure was the last thing on my mind. I suppose that is why it didn’t click immediately with me what was actually happening until Doug said it.

I have been writing bits and pieces of this all day – anytime I felt like I was making him nervous, not really knowing if I’d even post it or not. It just helped me to write it. If you are reading this, that means I decided to hit publish.

We have an appointment with his doctor tomorrow to schedule his tests and I have other suggestions from friends with children that have seizures one being an EMT as well,  that I will bring up with the doctor tomorrow. But for now, I guess I just wait and hope it doesn’t happen again or we can figure out why it happened. If we can’t figure that out then I just have to hope it can be easily treated and I hope I am not scarring him for life with my anxiety over this.

I am trying desperately not to…..