Yesterday started just like most every other day. We have been working on getting back to the school sleep and waking schedule for about a week and it has been going fairly well. I should mention, before I go on with our newest adventure, that Joshua relies on a consistent schedule to an extent that is almost hard to describe. Most kids do better when they have consistency, but for him, it is not luxury but a true necessity. This is true of most Fragile Xer's.
I'll give you an example of just how important this is. (Let me premise this by saying that Joshua is truly one of the happiest little guys I know. He is calm and smiley most of the time. He also minds really well and is far from a spoiled kid. I only say this so that you can understand the extremes of what happens when he feels out of his element). From the time Joshua was big enough to try to tell us about his needs, (he was mostly non-verbal at this time, which caused enormous struggles...a story for another time) he would completely meltdown if things were not done in a very specific order. At the time, I didn't realize the reason that he was becoming completely undone. It would go something like this. We'd wake up, I'd get Joshua dressed then I'd take him to high chair for breakfast. Seemingly without warning, he would be crying really hard and motioning for me to take him out of his chair. Not knowing what else to do, I'd scoop him up and carry him on my hip while I went about making breakfast, but the crying would NOT stop! As I was setting the breakfast on the table, Faith would go into the bathroom to brush her teeth and then Joshua would REALLY lose it. It is a wonder that the cops were never called to my home! You would have thought I was beating him with the way he would cry. He would hold his arms out to Faith and motion to go with her. At this point, I would do just about anything to get him to calm down so we followed Faith into the bathroom. While she brushed her teeth, I brushed his. Immediately, he calmed down. Breakfast was eaten and all was right with the world for the moment.
It took me a while to realize that Joshua wasn't just throwing a fit for no reason. To him, even as a tiny little guy, doing things in the "right" order was a necessity! So, in his mind, first we wake up, then we get dressed, then we brush our teeth, then we eat breakfast, then we do our hair, then we get our backpacks and we must walk out the door to the car at exactly 7:45. It is still this way, even at 8 years old. The difference is that he is now able to read the clock on the microwave, so he will tell me multiple times each morning what numbers are on the clock so that we will NOT be late walking out the door. Also, his meltdowns aren't as extreme most of the time. Instead of crying and completely losing it, he will start pacing and bouncing, and if he feels too overwhelmed, he will lock himself in his room. THOSE have been some really interesting days! Sigh...I digress.
So that brings us back to our latest adventure! The morning was going well. Everything was happening in the "right" order and I had a very happy little guy on my hands. We were going on a play-date with his best friend at 10 o'clock! Joshy had asked what time we needed to leave in order to get to the play place on time, so I told him 9:30 and went about continuing to get ready. At about 9:27, we were all ready to go when I noticed that my little Fragile X Man had what appeared to be dried blood in his ear. NOT GOOD, I was thinking as I, as quickly as possible, cleaned his ear and took his temperature. He, of course, was getting very nervous that we would be late, while I was getting very nervous that he had another ear problem. However, his temperature was low, he said he felt fine and he showed no signs of any pain, so I thought that maybe it had just been some dark wax inside his ear. At exactly 9:30 we were out the door and on our way to play!
Now HERE is where I made the not-so-supermom blunder of the day. I mentioned, as we were driving, that we would go shopping to try to find a new Hulk shirt (Oye Ve!) at 1:00. I'm sure you can see a pattern emerging with exact times. Exact times are an enormous part of our Fragile X life! Anyway, the play-date went fantastically. The boys played and laughed and had a really great time. We ran home quickly afterwards to pick up some lunch and that's when I saw it! Joshua had a stream of blood running out of his ear, down his neck. CRAP!!! It was doctor time, again. As calmly as I could, I told Joshy that we needed to go to the doctor and that we would go shopping for his shirt when we were done. "It almost 1 dot oh oh, mama! I fine. It shopping time at 1 dot oh oh!" I explain that we couldn't go shopping at 1:00 because his ear had blood. He replied, "It NOT blood, mama. It jelly! Now we can shop."
Needless to say, the drive to the doctor's office was a tearful one (for both of us...not gonna lie). The doctor who could see my little man, had never seen him before. Our doctor was completely booked up, so we took what we could get. This doctor was a very nice man, but I am sure he thought I was a completely over-reactive parent. Joshua still had no fever, and was calmly listening to Faith read him a story when he walked into the room. He politely said "Ms. Taylor, what makes you think your son has a burst eardrum? Children who have ear issues have high fevers and a LOT of pain. Joshua doesn't seem to have either." At this point I had to really work at remaining calm! I explained to the good doctor that this child has had over 50 ear infections in his 8 years. He had also had 4 eardrums burst in that time. The VERY tricky part about Joshua is that he does not feel pain like the average kid and he doesn't get fevers...almost ever! The doctor agreed to look at his ears, mostly to appease a high maintenance mom, I'm sure, but the minute he looked in Joshua's ear, his demeanor changed...a lot! He quietly examined the other ear and then asked to speak to me in the hall. "Ms. Taylor, your son has a ruptured eardrum in his left ear, and his tube is lodged in the eardrum. Also, his right eardrum is very distended and looks like it is about to burst as well." Well, what do you know? Maybe I DO know my son! With prescriptions for very high powered antibiotics in hand, we left.
So, it is now 3 days and counting until the first day of school, and not only are we still sans a new Hulk shirt, we are also fighting a major infection and are looking at yet another surgery as soon as the infection clears. Yep...just another day in the life of a seriously NOT-so-supermom!
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