I like routine. Even if it is the routine of the ebb and flow, the highs and lows, of being immersed in the autism spectrum. I can deal with those waves that produce somewhat of a rhythmic rocking as we float along. The gentle ups of good, easy days along with the downs of harder, more challenging days. It’s all okay. Easy-breezy. We will deal with things and move on as the Spectrum lifts us up and pushes us down throughout our lives.
But the Spectrum has a fierce undertow. At least my Spectrum does. And sometimes that undertow suddenly reaches up its watery arm and grabs me and yanks me down.
This morning began as an average day for us. Everyone is going about their daily morning business. The usual ebb and flow. The little ones are ready for breakfast and happily come to the kitchen. Lucy is getting her own yogurt and Henry is moving randomly about the kitchen as I get plates and cups out. (This is an “up” wave) Then, what goes up must come down. So I begin my short little dance with Henry to not only get his attention but then to get him to tell me what he wants for breakfast and then have him show me he is ready for breakfast by sitting in his chair. (this little dance is a “down” wave. But just a little ebb. One that is routine for the day). And these little waves are how we move through our day in just about everything we do. It’s all fine. We are managing.
Later in the morning all continues to go well at our usual pace until…we were in our family room. The little ones were playing happily and I was actually getting some work done at my desk in my office area which opens up into the TV and play area. Henry came to the middle of the room. He looked scared. Tears were welling up in his eyes. I glanced at him over my shoulder from my desk and I could clearly see he was getting upset but trying to fight it. I did a quick assessment of the moments just beforehand. I had not heard any loud noises, no screaming or squeals, or fights over a toy. What the heck happened? And this is where the undertow of the Spectrum pulls me down to its disturbing depths.
“Henry, what’s wrong?”
“Mom, I broke it! I can’t help it! I can’t control my brain. It’s hurting my brain!” He is crying now and I can hear the anxiety in his voice and almost FEEL it in him as I pull him close while he is physically pressing his hands to the side of his head. He cannot be consoled just yet. He continues to cry out about not being able to control his brain. I finally get him to calm down enough to understand that he broke the lid of the big plastic container we have that stores boxes of puzzles.
I have no idea how or why the lid got broken. All I can think about is how disturbing Henry’s words are. “I can’t control my brain.” “It’s hurting my brain.” He continues to press his hands into his head and lean into me. Hard. I have my arms around him tightly hoping that the pressure will help him. I am so panicked by his words that I struggle to focus on calming things to say to him. I can’t imagine what he is seeing in his mind at that moment that it is hurting him so.
“It’s okay.” I tell him. “It’s just a lid. Now is the time to use your options map. Remember? Take some deep breaths. Count. Can you tell me if you hurt. Does your head hurt? Do you have a headache, Henry?”
He starts to take a breath but then glances over at the broken lid and starts in about his brain being out of control again. And the crying begins again.
“Okay, Henry, what else does your options map say. Tell me what else you can do when you are upset.”
“Take a break.”
“Yes, Henry, good job! Take a break!”
“But I can’t! I can’t! I broke the lid and my brain is out of control and I don’t understand! I don’t know!”
Oh God, my heart feels as if it is literally breaking at this point. There is physical pain in my chest and I am willing myself not to freak out over Henry’s words! Focus on the options map I am telling myself! Henry is clinging to me and crying still.
“Okay, Henry, let’s take a break, okay? The options map says we can walk away too. Let’s do that. Let’s walk away right now and go upstairs for a bit.” He literally wraps himself around me, legs and all, and I pick him (which is getting to be no small feat at 40 plus pounds of solid boy!). As we walk by Lucy, I see she is still playing with her Barbie’s and watching whatever is on TV (probably the Bubble Guppies, her new favorite show). I tell her we will be right back.
“Okay, momma.” At 4 years old, she gets it. She lives it. She doesn’t always like it but it seems she has resigned herself to it.
Upstairs Henry is calming down. We sit on my bed and I hold him. When I ask him if he can tell me what he sees in his brain that is hurting him, he still can’t tell me. I hold him tight and we rock. I tell him that HE is in control of his brain. HE is the boss of his brain and HE tells IT what to do.
He is no longer crying but he keeps holding me tight and burying his head into my neck that is now wet with his tears. When I feel him loosen his grip I move so he has to look at me. (another difficult task!). But he does and I tell him again that he is in charge of his brain. And he controls his brain because he is smart and good and strong!
I don’t know how much of this he actually understood but he said he did and he was smiling at me. Then he started talking about blocks and train tracks and save for the one last tear that was still on his cheek, all was forgotten. Just. Like. That. He was off back downstairs to resume his play.
Inside I am still screaming! What goes on in my son’s head?!?! Why can’t I understand?!?! Why can’t I stop whatever it is from hurting him?!?!
I forced myself to let go of the disturbed feelings I was having. We will deal with those another day. Take that Undertow of the Spectrum! We have escaped your grasp once again and we swim up to the surface to BREATHE!