"Everything is funny, if you can laugh at it."
— Lewis Carroll
First, I want to thank everyone for all of the notes, comments, and private messages you have sent me. Each one makes me smile and I am always appreciative of the encouragement! We seemed to be doing well for a while and then we took a drastic turn, behaviorally speaking. For the last week we have had a string of 'bad' days with constant crying for hours on end. Crying that ranged from whining and whimpering to full blown screaming at the top of his lungs. We have had many sleepless nights with Cruz refusing to sleep. He has finally chosen a spot in his room on the floor behind the door where he will sleep in both at night and during a daytime nap. He has been repeatedly asking for something specific only to refuse it, only to cry for it, only to refuse it, and so on and so forth. He has had these fights of rage where he will just start punching and kicking and throwing things and hitting himself. It has been a tornado around here. And then there was tonight....
Tonight we were invited by my parents to attend a Cardinals game, and pre-game dinner, with all of the employees that my dad works with. Let me start by saying that Cruz doesn't do well waking up from naps. It isn't uncommon for him to cry for an hour or two continually after waking up. I knew going into this that it was going to be a gamble. I made sure I had everything a mom could possibly need, food in separate bags and bins on ice, milk for both kids, water for both kids, all gluten free snacks for the 3 of us, diapers, wipes, change of clothes, etc. We waited until literally the last second possible to wake him up, change him and put him directly into the car. I had the sippy cup waiting, a video ready for the car ride, both blankets, etc. All day I kept reminding him it was coming, and telling him it was going to be so much fun. The car ride was okay as well as the walk in, then we got to the tent where everyone was eating. Hurricane Cruz hit pretty quickly. I'm not sure, as I never am, what specifically triggered this meltdown. It may have been the multitude of sounds, of people passing by, strangers waving hi, but he just freaked out. He looked like he was fighting Karate with blades and kicks and elbow swipes, while sitting on my lap facing me. The rest of the family was getting food and I sat with him on my lap trying to mute the 'no, no, no, no' that he was screaming. I am always afraid if I am carrying him people will think I am kidnapping the child! He would roll his head and push and kick for a few minutes, and then he would pause momentarily to hug me tightly and push his head into my chest. It didn't take long for people to start staring and it was one of the first times that I had felt both embarrassed and yet also defensive of him at the same time. Most kids respond to threats of a spanking, removal of a toy, etc., to curb their behavior. But those of us with special needs know that to a child with sensory issues, the threat of taking a toy away when something is 'hurting' you, isn't really going to do much good. I wished I had one of those signs that I could hold up on a stick that said, "My child is special, sorry to interrupt your dinner, carry on... pretend were not here" There are always people that give you that look like, 'why can't she calm him down' or 'man if that was my kid....' or there is the occasional someone that comes up and offers something to make him stop crying, like a snack or sticker, which is kind but it can really send him over the edge. I need to make a shirt that says, 'Approach with caution, I'm a screamer' because it is awkward every time someone asks, "is he okay?" or "why is he crying?". Honestly, I don't know if he is either. If I did, I might be able to get him to stop. It is also very awkward if someone pats him on the back and he covers his ears or eyes and yells no, no, no. I just never really know what to say. So, after a very long time of struggling and panicking, (panicking to the point of shaking and heart racing) we finally realized that it was the texture of the dry cereal that was really bothering him. He wanted to eat and liked the taste but it has a strange texture that stayed on his fingers. He wasn't giving any indication of that for the first 30 minutes, then we realized it had to do with food, then we realized it was cereal, but the process of elimination took forever. Once we wiped his hands and showed him how to wipe his hands he seemed to do better. He walked back and forth on the aisle leaned over the row in front applying deep pressure to his torso, which he does to self soothe a lot. He was of course fixated on the clock and on the dirty things on the ground, but he had a lot of fun on the playground. Towards the end he had calmed down enough for mimi and daddy to explain the game to him and he really enjoyed watching them throwing the baseball. The weather was beautiful and he probably could have stayed longer but Wren was past bedtime. I wish I could post that we are on the up and up and everything is smoothly improving, but I wouldn't be truly honest. It has been a really rough week. But despite the behavior, I do have a peace. Maybe it is all of the natural supplements I am on, or the countless people praying for us and our family, or I may just be totally delirious from sleep deprivation, but I'll take it. I do feel a little beat up this week, but I am not 'down'. I know there are going to be these valleys in this journey that we are on. The moments, or should I say hours, can be very frustrating but we just kind of hunker down and brave the storm and look for the silver lining.
In a ball game, everyone cheers for their team. We are on team Cruz. Sometimes you feel like you keep striking out, sometimes you get to walk, and every now and then you hit that home run. You may be ahead on some innings and behind on others, but you keep cheering them on. There have been days where we've had grand slams and there are days when you want to kick dirt on the plate and yell at the umpire that 'Its Not Fair'. And sometimes you get those moments in between for a funny video on the screen or where someone throws t-shirts or a hot dog at you and provides moments of humor and distraction. Our friends and family and all of you praying for us are the cheering fans in the stands. And lets be honest, the game would be way different if the stadium was silent and nobody was around to celebrate the victory and booh at the defeats. As parents we don't have the luxury of just playing one position. We are the pitcher, the catcher, the short stop, and we are in the outfield. As pitchers, we throw our best opportunities and efforts to see what he can hit. As catcher, we stand ready for whatever he throws us. Tonight Cruz threw us a curve ball, we would love to sit back and review the game tape to strategize for the next time and see exactly what happened. So grab your peanuts and cracker jacks and root, root, root for the home team!