When we arrived to the rehab department for Nea's OT appointment, the waiting room was pretty full. Not too surprising since all the 9:00 a.m. appointments were gathered. Nea ran to the fish tank and began her usual ritual of "Look Mama! Fish! Look, a fish!" as I signed her in and gave her my usual reply "Yes, I see!". Another child was viewing the fish tank and seemed to pick up on Nea's excited energy. The girl was jumping up and down about 4 breaths from Nea's face and yelling "fish! fish!" I motioned to Nea to come to me so I could take off her hat and jacket. The girl, in a way to try to be helpful, snatched it off her head and brought it over to me gleefully. My girl was crumbling by the second and I couldn't make it stop. Nea ended up cornering herself against the fish tank and the wall yelling back like a dinosaur.
Bad sign.
What that little girl didn't know is that is Nea falling back to the only defense she has when she feels threatened. Yelling loudly with a growl undertone is the message, "I am very uncomfortable and I don't know how to stop you!" She seems to be in "flight or fight" and was ready to bolt. Thankfully her OT came to get her. As I unzipped Nea's jacket and helped her out of it, I whispered to the therapist, "The last 3 minutes have been really bad ones." She scooped Nea up and off they went to the rehab gym.
I spent a lovely hour in the waiting room reading on my Kindle (my newest, fun toy) and sipping my green tea chai. 24oz, no less. Apparently I had an unconscious tug to get in a relaxed state of mind because I was about to face an epic meltdown. But for that blissful, unaware hour I was transported to the story taking place in Nova Scotia.
When the OT brought Nea back to the waiting room, she seemed to be in a relatively good mood. She greeted me with a hug and went over to play with the books as the therapists and I chatted. Nea had done well in her session. She listened to direction, she focused on her activity and she was verbal for the majority of the session. When the therapist left, I told Nea it was time to go and she simply responded, "No Mama, I can't." That phrase is usually an indicator that she doesn't want to do something, and it's precognition thought of "I can't handle it right now."
So I waited. I let her explore a couple other books and read for 10 more minutes. Finally she said, "Mama, you have paci's in purse?" Doesn't every Mom? I told her yes, and that she needed to come get them AND it was time to go. I patted myself on the back for giving her enough time, some space to gather her strength and move her on out the door.
When the door opened she flew out and around the corner. Again, a ritual of hers. After the run down the gallery hall she stops at the bead-table to play for 5 minutes before we actually go out the door.
Ooops, the bead table wasn't there.
The hospital is hosting a Radiothon to raise money for children's services and the event takes place in the lobby/gallery. (Now you must know, it didn't hit me until the drive home what this really, actually meant.)
Nea was bouncing and bounding all over the lobby. She looked like the ball in a pinball machine. I kept trying to coax her to me with oh so helpful phrases like, "Come on, time to go" and "Poppa is waiting" and "You have school today." I could tell by the look on her face that she wasn't really processing and essentially I had lost any hope of connecting with her. When she would come near me I would grab on to her and she wriggled, screamed and starting hitting, "Let me go! Let me go! Let me go!" So I waited. Again. I let her ping around the lobby for awhile until it seemed like she was together enough that I could try again.
No way did she want her jacket and hat, but she agreed to hold my hand. We were almost to the door when it hit her full on. I could almost feel it as she collapsed to the ground. Screaming. Yelling. Head banging. More yelling. The dinosaur yell. The screaming. She kept yelling "No! I can't! No! No!" It went on and on and on and on. Most people ignored me, some rolled their eyes at her. I decided that personal space be damned, I was going to have to save her.
I scooped her up and threw her over my shoulder in a fireman carry. And with that, I opened the Wrath of Hell.
She had been violated. She no longer had choice. She had been picked up, man-handled and she was spitting venom. Kicking, screaming, yelling and crying. It was the longest 2 minute walk to the benches of my life.
I hoped the fresh air might help. Lord knows she was using her lungs well enough, and my hope was that they would fill with new, clean air to help get her grounded. I carried her to a bench that's tucked away in the corner. She wanted nothing to do with me. I held her tightly, squeezed and sang her favorite calming lullaby. But she pushed me away and laid down on the bench. For a solid 5 minutes she laid there as her brain tried to find calm and her body shuddered constantly.
And I sat there and cried for her. She had no tears left. She had no more anger or frustration and certainly not words that could be given. We sat in silence and just tried to .....be.
She finally sat up, allowed me to put on her jacket and hat and we walked towards the parking ramp. There are about 15 metal poles between our spot on the bench and the road that goes to the ramp. She had to "clink" every single one of them as we walked by. If she were home, I imagined she would have been lining up cars or trains to try and get order back in her life.
It took us a long while to get to the road. She stopped along the way and threw herself to the ground on her knees. Once we reached the sidewalk, just on the other side of the road she sat on the railing overlooking the drive below. Okay, girl-child, we really need to start moving....we were 40 minutes trying to get out the door and to the car! I gave her one last, "It's time to go, sweetie" and walked towards her. She did the one thing I've been dreading her entire life.....
She darted in the middle of the road right in front of a car.
My heart skipped a beat. No, forget that. I died right there.
Thankfully the car stopped and I grabbed her to the sidewalk.
My patience was whisper thin at this point. I had remained Zen like for a pretty long time which I would like to give myself 300 bonus points for maintaining. But that last event, was the end.
I had her by the wrist and we headed for the car. Again with the screaming, and the kicking and the crying and the all out meltdown. I literally dragged her on her butt the entire way to the car. I kept saying, "I know this is hard. I know you're having a bad day. I'm trying to help you. I really am." It wasn't for her benefit, but rather for the crowd that was starting to assemble. And, I was trying to talk myself into as well.
We got to the car, I buckled her in and felt so much relief. FINALLY she was strapped in a car seat, safe and under control. I moved to the driver's seat, got in, laid my head on the steering wheel and sobbed.
I called Poppa as soon as we were on the road to tell him, "You are about to get 2 girls who are a tangled, fragile mess." He asked what happened and I told him the story. "Come home, and we'll get it all together. Don't worry."
Did you ever see the movie Ice Castles? Remember that scene at the end? For those that don't know it's a movie about a figure skater who goes blind. Robbie Benson is her boyfriend and he gets her back to figure skating and they are able to "hide" the fact that she couldn't see. They practice and practice and she measures out each pace so she doesn't hit the walls as she does some pretty extensive tricks. She completes her competition skate flawlessly and the crowd cheers. In appreciation of her beautiful skating, they throw red roses onto the ice. Of course she doesn't see them and trips over each and every one...falling and flailing all over the place. Robbie comes out to the ice and says to her, "We forgot about the flowers."
And that's what I realized on the drive home talking to Poppa. That lobby looked one way when we walked in....and it looked entirely different when we walked out. The ritual of playing at the bead table was not there and the place was packed with tables, chairs, computers, phones, people. It didn't look remotely the same and I would imagine was the start of her unraveling. I would have done better to go out an entirely different way then a path that she expected to look a specific way.
These are the days when Autism sucks. These are the days that I can hardly breathe with the overwhelming knowledge that my child suffers so much on the inside and there is absolutely nothing I can do. It's unnerving and it makes me so damn mad.
I got through today. I got us home safely. As we speak, Nea is in a dark, quiet room watching her favorite movie wrapped in her favorite owl blanket. She's bounced back fairly well. Me, I need a hot shower and more tea.
I vow to try and never forget the flowers.
