Out with the Old in with the New!

Since we have been on break from school, things have been great with Colin. This tells me that school is a stress in his life. Even thought he says he likes school, I wonder how much of that is him WANTING to like school. Only time will tell when we head back next week. The first part of our break we went to Florida. Now, I was a little nervous driving down but we had recently driven out west so I knew it wouldn't be too bad, and it wasn't. We stopped in Orlando for 3 days and took the kids to Universal Studios and the Magic Kingdom. Colin did not hold up at Universal. Standing in line was not for him, he became way too impatient. The one time we stood in a pretty long line I was extremely nervous the whole time. I thought we would get to the front and have to bale. I worried about his brother and how that would make him feel. Luckily he managed to make it and we were able to enjoy the ride as a family. But, after that C was done. My husband took him back to the hotel to swim and rest and my oldest and I stayed to ride the roller coasters. It wasn't the fabulous day I'd imagined we all would have together but it worked out for the best. Colin didn't have a major blow up and his brother and I got some quality time together. Here's a wonderful tip for anyone that has a disability. Disney has a Guest Assistance pass. A friend of mine plans Disney vacation and she gave me this tip. Is all I had to do was go to the customer service area and request it. They asked me what my concern was (they didn't really care to know his diagnosis) and I simply told them, "I am concerned he will not be able to handle waiting in line." That was it! We got a pass (they took his picture) and we were able to ride the rides with a minimal wait time. We would go check in at a ride and they would tell us what time to come back. When we got back to the ride we went through the fast pass line which at most rides is only about a 10 minutes wait, if that. We were able to stay together as a family and enjoy the park together. Colin had a great time and he mentioned that he liked Disney better (over Universal). I plan on writing Disney a letter to let them know that I believe the guest assistance card helped us have a great time. I really think without it we would have had a repeat of the experience we had at Universal. I close this last post of 2014 with two things in mind. #1 2015 has got to be a better year for Colin! #2 I'm ready to close the books on 14 and move on to bigger and better things! Happy New Year!

And so it continues

Colin has been having some asthma issues and this cough that won't go away. Over the weekend it got much worse, to the point that he was vomiting because he was coughing so hard. So, I took him to Urgent Care. They took an x-ray of his lungs to see if it was pneumonia (it was not). But, in the meantime, they found a spot on his lung. Sigh.

Most people would freak out. "But, not I" says the mother hen who has been through this a gazillion times. Ok, not a gazillion but enough to know not to panic. In fact, these kind of things have come to be more of a nuisance because most of the time it turns out to be nothing. So, it's just another appointment we have to schedule. Which means another day I have to take off of work and another day he misses school.

Fortunately, the urgent care doctor called today to explain what the concern was. Basically, there is a little spot that they are not sure of. They think it could just be due to an infection and want another x-ray in a couple of weeks, after this virus (or whatever he has) has cleared up. Hopefully, it will be gone by then. Again, just another nuisance, another appointment, more time.

And so it continues.......

What breaks my heart the most

I have been preparing myself  the last couple of years for middle school with Colin. At his last 2 IEPs I stressed that my biggest concerns for him were not academic but social. Since I am a teacher, I know how kids can be , especially in middle school.

Everybody loves Colin. Let me rephrase that, everybody over the age of 18, loves Colin. He doesn't have any friends his age and that hurts. Sure, the kids that are in his special ed class could be considered friends and in elementary school, they were. But, I'm not talking about special ed kids.

The general education kids are usually nice to him, I think.  Earlier this year I witnessed an exchange that makes me wonder, especially now in middle school.  Colin really wanted to go to the school's first fun night. I knew it would probably be a good idea for me to volunteer to chaperone the event (and I'm glad I did). While we were waiting for the event to start some 6th grade girls were hanging out together and Colin went up to them to say "Hi". One of the girls said, "Hi" and then looked at her friends and rolled her eyes. Most of the other girls were giving "looks".  My heart sank to my stomach. I knew exactly what those looks meant. I knew because I was that 6th grade girl once.

At first, Colin was all over the place and not paying much attention to me. I had my post and was standing, watching the dance floor. He did come to the dance floor and was bored because he had no friends to hang out with. I think he tried. It only took an hour for him to have a melt down. He came to me with tears in his eyes and wanted to leave. I don't know what happened and my best guess is that nobody was paying attention to him. I sure hope it wasn't because someone was being mean to him. That I will never know.

We always have treated C as if he were a gen ed kid. We had him try all of the sports you normally would with kids. He played soccer for a long time with the gen ed kids. He was in scouts all through elementary. He played basketball.  So why am I hesitant to have him sign up for basketball in middle school? I think you know the answer to that.

I have decided at can't tell him no. I need to let him do it and hope and pray that the kids (and parents) understand. I hope and pray that they will encourage him and cheer him on. Much of his behavior issue has to do with his self esteem. In fact, I would say probably most of it does. So you can understand another reason I am hesitant. If this doesn't go well, it will most certainly escalate things with him.

I really hate that my motto is , " expect the worst and hope for the best."

Random pictures, now that I know how to add them!

Living on the Edge

Today we had our appointment with the Cardiologist. Back when C had his seizure and we were at the ER they did an EKG and found a QT prolongation. My understanding is that is the time between heart beats and his number was on the high side which means he has a longer time between beats. Since we took him off of the med (that was working) that might have caused the seizure, that same med could cause QT prolongation as well. I was hoping that since he is off that med that his rhythms would be at a more normal number and we would be done with the cardiologist. Do you want the good news first or the bad news? Let's do the bad first. His numbers were lower but still in the gray area and the doctor thinks the one behavior med he is on might be the cause. He wants us to see if we can find a different drug and then check with him again in 3 months. Which means that essentially we have to start over on the behavior meds and we have to go back (another appointment).  Ok, so that's the bad news. The good news is that everything else with his heart looks good!

The other bad news is that he is still having angry episodes (although nothing too violent) and in the meantime he is destroying things. Tonight was a rough night. I thought things were going well and then he exploded! Long story short, we managed to escape kicks, punches, bruises and the like however, we need to buy another blind for his bedroom window. It took about 2 hours for him to calm down and finally go to bed.

So I feel as if I am living on the edge, but not in a fun way. It's more of a "I don't know what is going to happen next but good or bad, I've got to go with it!"

This is not a picture from today but a picture from our appointment with the neurologist a few weeks ago.  I'm finally figuring out how to add photos to this blog.  This was getting ready to do an EEG of his brain. Basically, trying to trigger a seizure.