If wishes were horses……

Posted by TakingItAStepAtATime

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If wishes were horses……

*******

**Names changed

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

Posted by TakingItAStepAtATime

…..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…..

Still knocking

Posted by TakingItAStepAtATime

It has been a busy week and by the time this post publishes, we will be spending a long weekend at the Cape. Normally at this time of year we can expect semi-warm weather, but judging by the week we just had, it is not looking good. Fingers crossed for no rain at least.

This trip was scheduled so that I could attend the birthday party of the mother of one of my oldest friends (grammar school, believe it or not). Another old friend will be coming up from Georgia to attend as well. I am looking forward to seeing them.

Since we were going to be traveling to Cape Cod for the party, we decided to make a long weekend of it. We are hoping to get to Martha’s Vineyard or Nantucket on one of the days we’re there.

Three years ago we traveled to the Cape for the same reason, but we did not stay long enough to do anything else, so we decided to go back a few months later to visit Nantucket and to pay a quick visit with my friend and her family.

Below is a re-post from that adventure. I am keeping my fingers crossed for some decent weather this weekend and I am still knocking on wood…

From May 2014 …

Knock, Knock, Knock on Wood

Just recently I was reading a blog that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip came at age 21 and for the most ridiculous reason. As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car in order for him to understand what could happen if he were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

I mean, I have really been lucky (still knocking wood), so much so that we’ve never had to use a Band-Aid. He loves Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.
Band-Aids, especially “character-themed Band-Aids” are on his “odd gifts list” along with the rolls of scotch tape, mentioned in an earlier blog.

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends before we headed home.

We arrived on Friday evening. DC was happy to be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel. It was a nice day. We had a good time.

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water – even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect. Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

I thought possibly his allergies were hitting him harder than usual – Doug had the deck door open and the deck was right on the golf course. “DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense, and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration – DC being able to tell me that something is wrong and what is wrong is a very BIG deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear. I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried to keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk. He would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety. I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but watching DC in the middle of the lobby absolutely loosing it frightened him a bit, I think and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously, what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally became comfortable with doctors. I didn’t want a long and scary emergency room visit to erase the years of progress he had made. The other issue was it was his EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to buy the tweezers and flashlight. Now we are all in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so upset that I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area; I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around and she asked if he needed to be sedated. I told her (with fingers crossed) that he would not.

They took us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!” but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, I suppose just to be sure that it was out.

DC calmed down immediately and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very proud to tell people that he had been in the ‘hos – i – bull”.

We were done and over it in time to get back to the room and finish packing. Now he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no……. They went directly into the garbage.

We were also able to visit my friend as planned.

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.
(and yes…….. I am still knocking wood……………)

Knock, Knock, Knock on Wood

Posted by TakingItAStepAtATime

Knock On Wood

No Injury – Just wanted to wear a Band-Aid

Donald Duck – part of the “Character Collection” (no injury, just a fashion statement)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water -even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect. Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I still could not see anything in his ear. I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk, he would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety. I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but seeing DC in the middle of the lobby absolutely loosing it; he looked frightened and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously, what hotel doesn’t have a flashlight?

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so out of control, I had to assume it was in there somewhere.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

We were done and over it in time to get back to the room, finish packing – where he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no.

We were also able to visit my friend as planned.

Visiting Friends

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.