PTSD and the Caregiver

Today has been one of the most emotional days I have encountered to date in my life as the parent of an ASD child. Today I learned just what PTSD really is, what its ramifications can be. Today I was given a very clear picture of the stresses I have endured raising a child on the spectrum, the struggles I have overcome, the inner strength I have found. Today I was also shown what true love is, unconditional love, team work and genuine partnership.

It started out as any other day starts out. Up at 6:30 making coffee, waiting for The Boy to awaken, listening for the telltale sound of his radio. We heard the strains of country music at 6:45. Bleary-eyed, The Boy came staggering out of his room, flashed his signature devil-may-care grin, giving us his usual morning greeting, “Dave smiling. Mom smiling.” Off he went to begin his everyday routine.

Part of his morning routine as of late is listening to “good” songs on his iPad while waiting for breakfast. And then, also part of said routine, the “sad” songs started. Knowing full well that he would lose the privilege of listening to his music, he continued with the ritual: Listen to the sad song, turn off the iPad, go get clean socks and underwear, put on long pants, use the bathroom, put on jacket, go to the porch, commence crying. He was offered the opportunity several times throughout this process to change his mind, to not cry and, therefore, keep his sources of music. But he chose to cry instead. So, once again, we unplugged his radio, turned off the computer and took possession of the iPad.

Immediately, it began: “iPad. iPad. iPad. iPad. IPad. iPad. Music. Music. Music. Music. Music. Music. iPad. iPad. iPad. iPad. Music. iPad. Music. iPad. Music. iPad.” We spoke softly to him, in hopes of warding off the inevitable outburst and resulting Time Out. It didn’t work. He advanced upon us, biting ferociously on his hand, growling. Usually an automatic time out. This morning, desperate to avoid this punishment so early in the day, I took him to another room with the intention of giving him a movie to watch, some paper to write on, a book to read …. Anything for distraction. I knew he was escalating, and I knew that yelling at him was not going to improve the situation. So I kept my voice calm and soft. I even tried to hug him. That was a mistake.

At first I thought it was working, that he was returning my hug. Until I felt my glasses pressing into my face, felt the vibration in his body as he was squeezing my skull with his arms, felt him biting his own hands behind my head for all he was worth. Over his shoulder I could see Dave approaching, ready to step in if necessary. The reassurance of “backup” is a feeling that is still new to me. Dave saw us “hugging” and started to walk away. I felt Vic’s grip loosen ever so slightly, then strengthen again as he pulled me in even tighter. I wasn’t sure how I was going to release myself from his death grip without injuring myself or him. I loudly told him to stop, sensed (rather than saw) Dave turn around again and head in our direction, ready to do whatever I needed him to do.

Vic did release his hold, at least enough for me to step back. But he was nose-to-nose with me, growling, biting his hands. I told him to sit on the floor. He didn’t budge. I told him again to sit on the floor. A third time, by this time I was yelling. I was trying to push him away from me, lest he grab me again. It was like a flea trying to move a mountain. Intervention time. Dave stepped in and was able to wrestle him to the floor. Not an easy feat when The Boy is as worked up and pumped full of adrenalin-fueled testosterone as he was this morning, but the mission was accomplished. Not without injury to Dave’s arm, neck and back.

Let’s briefly touch on that … Dave has a condition called Ankylosing Spondylitis. It’s an inflammatory disease which causes his bones to fuse. There is significant damage done to his spine, neck and ribs. Fusion of the spine

is well underway. We have been advised that any significant trauma or fall could result in grave, probably irreparable, damage. Bottom line: Dave could literally break his back or his neck. Something that is always on my mind, particularly in a situation like this. No stress!

So, there we were. All of us reeling from the incident, trying to make sense of what had just happened. The Boy on the floor, in an all-out rage, growling and biting, rocking and flapping. Dave and I trying to assess the situation as quickly and efficiently as possible. Knowing that an immediate time out was necessary. Dave returned to the kitchen after verifying that I was, indeed, still in one piece and was able to handle the situation from there on. I got the timer. The Boy was still a raging lunatic, but sitting on the floor. He was still in such an agitated state that I was reluctant to begin the time out until he had calmed down enough to accept the timer. I sat at a safe distance, speaking in what I hoped was a calm, soothing voice, telling him that the time out would start when he could count to 10 without biting. It took several minutes, but we got there. Timer in hand, his cool down process had begun. I joined Dave in the kitchen.

And broke down. Over the course of the 10-minute time out (double his usual time out length, but MUCH needed this time), my mind was assaulted with flashbacks of the dark days of the past. The days when Vic would skip happily toward me, smile on his face, only to bite, scratch, kick, hit, gouge, choke me. The days when I simply could not be in the same room he was in because I didn’t have it in me to defend myself one more time. The days when I gave serious consideration to placing him in a home. The days when I was ready to give up … on him and on myself. These were not just mere memories. It was like I was there again, living those moments again. I felt it … emotionally, even physically. I cried this morning. Not just tears running down my face. Gut-wrenching, soul-deep, wracking sobs. I couldn’t stop. I couldn’t talk. I couldn’t even breathe. It scared Dave, the raw, visceral emotion. Finally, I slowed myself just enough to whisper almost inaudibly my deepest fear. “What if we can’t keep him at home anymore?”

Another deluge of fresh tears mixed with memories of another dark time. Dave did what he does best. He held me while I cried, offering not only support and reassurance, but the promise of unconditional love and family. “We are a family. We are going to do whatever it takes to help him through this. We will stay together. Forever. We will find him, we will help him. He’s our boy.”

I can’t say with absolute certainty that those were his exact words, but that was the message. Loud and clear. That cut through the emotional turmoil, the tears. That message really hit home. We ARE a family. He IS our boy. We love him, we will help him. No matter what.

I realize that for some who read this story, it seems an absurd jump to go from “He’s biting his hand again” to “Oh my god, what if he can’t stay with us?” But, as every parent of a child with special needs can tell you, every action and reaction has an infinite number of possible results. I read an article recently that stated that the brains of parents with special needs children are very similar to those of combat soldiers. Every single decision you make involves assessing the current situation (external stimuli such as background noises, temperature, metal state of the child and yourself, lighting, and an endless list of possibilities), the demand, the potential outcome of your decision. Is this a reasonable request? If I say yes, what precedent am I setting? If I say no, what precedent am I setting? What “dangers” (visible or invisible) might present themselves if I say yes, or no? In a split second, without realizing we are even doing it, we take all things into consideration before reacting. Much the same as a soldier on the front line does.

True, this morning’s incident was relatively minor. But immediately, my mind started assessing the situation. Am I making the right decision? Is the punishment too severe? Not enough? Am I reacting appropriately? Is anyone in immediate physical danger? He had to be physically restrained … is that going to happen the next time? What if this happens to someone outside the family? Who is he going to hurt? Is he going to hurt himself? How can we help him understand what he is feeling in the heat of the moment, and teach him more appropriate ways of demonstrating those emotions? Does he even understand what emotions are? What is going on inside of him, physically or emotionally, that is making him act this way? What can I do to help? If this happens again, what if I’m alone? What if Dave is alone? What if he does this to a complete stranger? What’s going to set him off the next time? What if we can’t restrain him? Is he going to hurt us? It goes on and on, and these are almost simultaneous. All these questions and so many more were going through my head in a fraction of a second.

It has been a day of extreme emotion. A day of self-doubt. A day of learning, of questioning. A day of realization, of hope …. And love.