the mystery of autism

Well, there is sure a lot of mystery involved in the world of autism. A lot of it revolves around the mystery of what causes this. Why is one child so much more profoundly affected than another? Why do some kids get better? Why do some kids get worse? Why are some kids verbal, why are some non-verbal?

The mystery of autism that we are currently embroiled in is, WHY on some days does O just bounce out of bed as happy as a clam, ready to face the day, doing his best to be flexible in situations that he doesn’t want to? Then…the very next day we’ll settle in for a week of complete inflexibility. Very rigid behavior that reminds you of how darned daunting this autism thing is. Every tactic that was working for you is completely back firing in your face. Every boundary set is obliterated. So much screaming. He seems like he is stuck. He is. He seems stuck in his head. Like the thoughts that he is trying to process aren’t making it to the surface. He seems like he is in pain. He looks confused and bewildered. He doesn’t look happy. He is reactive. He is volatile. He can be violent. He spaces out a lot. Is he just kinda checking out to process? Again…it’s a mystery. Because just as soon as you start to accept this as your new reality, he turns on a dime and says, ‘oh, sure, I’d love to have dinner’ and seems to snap out of it, when two minutes before he was throwing it across the room at you while kicking you in the stomach.

Someone unravel this mystery. I’m ready to find out what the real deal is here.

Today was beautiful. O was in great spirits. He was amazing and was full of words and thoughts and comprehensive stories. It’s weird. Almost like he had to go through that phase; had to work through something to get back to us. He’s a different kid today than he was yesterday.

that sigh.

I remember that sigh. I heard it the other day when I took a deep breath in, then out. On the tail end of my inhale I felt that shake. That same shaky breath one gets after crying for a few hours or a few days. It’s like Grandpa Fred and I were breathing in sync. My Grandpa Fred had that shake in his breath whenever he took a deep breath. You didn’t just hear it, but you could feel it. It always haunted me and drew me into him at the same time. He endured much tragedy in his life and overcame many an adversity. His wife died when she was only 39. He raised 3 boys on his own. He lost his youngest son when he was only 29. He came over from Japan on his own on a barge when he was only 11 years old to join his parents. Then his mom died of influenza. His dad moved back to Japan. He kinda raised himself. He was interned with his new wife and young son to Gila Bend Internment Camp for the duration of  WWII. You would hear all of that in his mere breath when you listened carefully enough. I have heard it in my own breath intermittantly these past months but have ignored it entirely. Willingly. It’s terrifying.

Ahh…that sigh is the sound of life slipping through your hands and it represents your complete inability to do anything about it. It’s the pain, suffering, and trauma wrapped up in the inability to breathe fully any longer. Afraid of what might happen if you do. Where there was once a smooth, gentle exhale, a choppy, interupted sigh has replaced it. Not only that. The oxygen flowing through your body now comes at you in a different flow. It’s neither here nor there. Sometimes (when you hold your breath) oxygen is restricted. Sometimes (when you hyperventilate) although the repetition of the breaths, there isn’t enough oxygen. Ugg…just need some more oxygen it seems.

I never knew what it was until now. As I muddle through this phase, I hope to hear less of that shake in my breath. I hope that I won’t have FEAR written across my face when my kids do something scary. I hope that I can get out of this, ‘hope for the best, prepare for the worst’ mentality that I’m entrenched in. I hope that I can be more carefree again. I hope that the shake in my breath goes away.

yet another acronym

Well, it seems like I can add another acronym to my balancing act…PTSD. We’ve barreled through ADD, ASD, IEPs, OCD, TBI, CT Scans, MRIs, EKG, CBC, CUTE (Crazy-Unpredictable-Toddler-Exhaustion…just made that one up!), ABA, SPD, DRI, PICU, GFCF…

…but coming home from the hospital with J from his last brain surgery, was such a relief that I let down my emotional guard down long enough to take a deep breath of fresh air but it was met with extreme resistance. Shaking, crying, sweating, screaming, and more shaking. These fits passed through me for no apparent reason. Sure, there are some obvious triggers, but it came on like waves. Violent waves met with a strong, sand bagged levy. The first two weeks were miserable. One constant panic attack. Then I thought it was over. I was proven wrong as now it comes and goes intermittently.

I am going with this. If I fight it, I feel like it’s going to be worse. So, I’ve eliminated any outside contaminants…no alcohol, no fingernail biting. I need clarity. Pure, raw thoughts and reactions and feelings.

Resisting my strong desire to numb these emotions and uncontrollable feelings with a delicious glass of chardonnay, I’m left to face the demons on my own. The emotions that I wasn’t able to deal with when I was in survival mode during those first few months. Unable to let down my guard enough to sleep. Holding it together. Barely holding it together yet at the same time wound tight enough to repel any other emotions that might seep into the stature that I was trying to keep. That was necessary to keep.

Now that I’m at the 6 month mark, I’m able to process this. I’m able to finish this post that I started 3 months ago. Fits of panic that rush through me at any given time without warning have diminished some. They still do come in waves. There is no warning. The middle of Costco, playing at the park with the little guys, or making dinner. I am completely powerless to them. I’m thankful that I’ve been able to barrel through this. They will decrease in time. I’m sure of that.

Prior to this change in our world 6 months ago, anxiety was not something that I had experienced. I had some serious anxiety about time. Interestingly, now that has completely disappeared. Time is a whole different concept. Yes, I’d love to get places on time, but the obsession with being on time has been replaced with an anxiety of just being there.