Tuesday, March 12, 2013

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...


  1. I know just how you feel. How about the times when you have no idea what's waiting.
    Went to pick Ben up from his after school program yesterday. He had pinched/scratched two students (not too bad) and his aide. Her he bruised and scratched her chest and arm.
    Now that he's 7 he's getting stronger and hurts more.
    This was the first time his aide didn't look so happy. The after school program is all typical kids, so Ben is already the stand out.
    Feels so good to scream once in a while.

  2. Yes, it does. It breaks my heart because I know he wants to communicate as badly as I want him to....Screaming helps, so does chocolate and wine...:)