These muffins suck....

Autism parents know the feeling of getting a text or a phone call saying your child is having a meltdown. We nod, we breathe in, our expressions move quickly back and forth between concern, understanding, determination...we know the panicky feeling of trying to get there as fast as we can, of talking to ourselves in the car, of dialing furiously...Major panic is when he has escaped. Minor panic is when he is in meltdown mode with someone besides me or his dad.
Tonight when I get home, he is red faced, with his snow cap and shoes on, he is howling, and gesturing. He throws himself into the kitchen chair and I squeeze him. His whole body falling against my shoulder. I can hear the desperation in my voice matching the pitch in his. "Please tell me..., What is it...What do you need baby...Tell Mom..." He tries again, and again.."Oran...Ore...Oran..."  He attempts to put his jacket on, and I tell him we aren't going anywhere. He howls again. He lays on the kitchen floor. I bring Gweneth over, and it helps for awhile. He puts on gloves and furiously pets her. "Lay down, lay down", he tells her and they do. He is calm enough for his ragged breathing to slow....He turns over and lays face down on the floor. I ask his respite caregiver what happened, and while we are talking I make the mistake of trying to repeat what sounded to me like "Orange". His head comes up and he glares, then the fever pitch scream...Shit....
His staff goes to the store for his beloved mini blueberry muffins...Meanwhile, I try having him call his dad, and I can hear him trying to calm Chandler down. Asking him questions, trying to decipher like I did...I am shaking my head slowly out of frustration. He lays down on the floor again, and I take the phone, telling his dad we are going to try muffins for calming.
When she comes back with the muffins, they are not the mini bite size pouches he has become so fond of these past couple weeks, they are regular size, and a different brand, in plastic. UNACCEPTABLE. Howl. Gwen is laying on the floor looking like I feel, in despair. I call dad back and he offers to take him overnight, so Chandler leaves with his caregiver, wiping his tears and shouting "Bye" at me over his shoulder. When he leaves, I drop to my knees, sobbing. I am so sorry I can't understand you sometimes Chandler. I know how frustrating it is to feel that desperation. I can see it in your eyes, and I feel all of it. I would give anything to take that away, to give you the ability to let me know what it is you need. We are working on it. Me, your dad, your staff, your speech professionals, your teachers, your friends....I promise you I won't ever give up. I will mourn this brief hurdle, and I will get back up, and try again tomorrow. A new angle, a new picture board, more time....we will get this. It's just one more piece to put in the puzzle...we'll get it...

A window in....

I love music. It's in my soul, I wake to it, I fall asleep to it, I live by it. It is a huge part of my life. Lyrics, and melody, and the way it consumes your emotions, your being. It changes a mood, it brings back a memory, it creates an element of anything that you wish. Anytime I am reflecting on anything, I find myself flipping through my ipod, looking for the feeling that I want to create. Sometimes I let the song choose me, and shuffle it is. Today I was looking. Changing my mind from one to the next. Chandler climbed up next to me on the bed and held out his hand. We locked eyes and he smiled. I handed over the iphone, and he was scrolling through, looking at me for help, and he said "Fun." It took a minute to register that he meant the band. He loves the band Fun. So I found the album and we play (to his delight) a couple of songs. Then I tried an experiment.
      I helped him pull up various songs and waited for his reaction. Different songs did different things. Recognition, delight, annoyance. I found out that he really likes Bruno Mars, Yaz (old one hit wonder from the 80s!), the Lumineers. Ah...eclectic taste like his mom. He does not like Rascal Flatts. And the Ting Tings made him recoil in horror. We both listened to the new song from Pink, for some reason the mix of those voices ( Pink with Nate Ruess from Fun) gave us both goosebumps. The smile of delight when they harmonize happened at the same second for both of us. What a beautiful thirty minutes of connection and understanding, and mutual happiness. I was in his world because this is a language we both understand. He probably didn't get the tears in my eyes, but I was lucky enough to stumble upon another way in. I will figure out a way on his ipad to make this functional, for him to be able to choose what he wants by looking at album covers. Any way for me to know my son feels like I shattered another window of autism. This one was a huge picture window.

"So let's set the world on fire. We can burn brighter than the sun...."   FUN