When she first laughed she was a few months old, lying on her back on one of those Gymini mats that have brightly colored cloth arches where you can hang things.
I found a pink pig, which I hung along side the striped star, the mirror and the bell.
Emma loved looking up at that pig, sometimes reaching for it, more often she’d try to grab the pig with her mouth. Then she’d bite the pig’s snout and chew on it.. She gurgled with laughter at that pig and we would all laugh along with her.
She also loved when one of us would cover our face with our hands then suddenly thrust our face into hers and shout, “Peek-a-boo!” Emma would break into peals of laughter and one of her first words was, “Again!”
Her innate happiness is something that has never changed. She loves life. And so it is particularly heartbreaking when she becomes frustrated, cannot communicate to us what she needs or wants. Often this ends with her biting herself, usually on her forearm. She bites herself hard, causing herself to bruise and she screams and cries from the pain. It is one of the many baffling things she does.
The first time she bit herself she was three years old. A few months before, she was bitten by one of the children in her special education pre-school. I often wonder if that child biting her awoke some untold sensation in her. I have since read countless cases of autistic children who inflict pain upon themselves.
Her self-inflicted pain is something we continue to struggle with to this day.
This past weekend, Emma ran into her room to watch a Gwen Stefani video (she’s a huge fan of Gwen Stefani). Within seconds we heard the distinct screams that emanate from Emma when she’s bitten herself. It is a sound that is unlike any other.
When I went into her room, she was seated on her bed holding her red arm, a set of teeth marks imprinted on the skin.
“Emma, what happened?” I asked.
“Emma bit her arm,” she sobbed.
“Why? Why did you bite your arm?” I asked.
“No Emma! You cannot bite! She bit herself,” Emma said, admonishing herself.
“But sweetheart, what happened?” I asked again.
“Ohhhh, sweetheart. You cannot bite your arm.” Emma said, mimicking my tone. Then more sternly in a scolding voice, “You may NOT bite. No, not our choice! If you bite, it is NOT okay!” She continued.
“You must come and ask for help, Emma,” I said.
“It’s not okay!” Emma said, shaking her head.
“Emma, do you need help with something?” I asked.
“Want Mommy to come,” Emma said.
“Is that why you bit yourself?”
“You have to ask Mommy. Mommy can I help you?” Emma said.
“Okay, but Emma next time just come and get me. You don’t need to bite yourself, okay?”
Emma nods her head. “Okay.”
We’ve had this exact conversation many, many times, with a few variations, but the general gist of it is the same each time. And each time she agrees to not bite herself again. And each time she bites herself anyway.
At one point Richard and I decided not to respond to the screams. It took all of our collective strength to ignore the crying. She just bit herself harder, over and over again. It was a brutal test of will and her arm bore the brunt of our experiment. The bruises an angry reminder of our actions did not fade for weeks.
The trick with Emma is to make anything into a game. I haven’t figured out how to make her biting herself into a “game”, but perhaps there is a way. Or it may be the answer is to figure out a way to make a game out of needing help. I will have to give this more thought.
Joe, Emma’s therapist is brilliant at turning things she does not want to do into a hilarious activity. It’s awe inspiring to watch Joe at work with Emma.
It is Joe who came up with one of Emma’s favorite “games”: the ‘don’t-you-make-me-come-get-you’ game. I don’t remember when Joe first came up with this method of getting her to do things she doesn’t want to do, but it continues to work beautifully.
“Emma, time to go to Karate,” Joe called to her the other day.
“No! One more minute,” Emma said, nestling deeper into the rocking chair.
“Oh don’t you make me come get you!” Joe said in an exaggerated angry/silly voice.
Emma immediately began laughing. “Noooooo.” Laughing hysterically she said, “Don’t you make me come get you!”
Joe made a big show of running toward her, swooping her up in his arms, dangling her upside down, while Emma shrieked with laughter.
Now when we need Emma to come and have breakfast or get dressed for school or any other time we need to motivate her to get going, one of us will say, “Hey Emma, you have to get dressed.”
“NO! One more minute,” is her usual response.
“Come on, Em. We have to go! Don’t you make me come get you!”
Squeals of laughter as she burrows deeper under the bed sheets. And then her little voice says in encouragement, “Don’t you make me come get you!”
If we don’t have the energy to hoist all 70 lbs. of her up and into the dining room, we just need to tickle her and pretend to chase her.
Works like a charm every time.