myverywildchild

The chaos and mania of parenting a child on the spectrum


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Elsa, Anna, Zombie Skittles and the Truth about Life.

My daughter and I just went to the movies, and had made it in plenty of time for the twenty five minute onslaught of previews, so we passed the time by playing the skittles zombie test, tasting the neon Halloween inspired flavors of mummified melon and Blood Red Berry, waiting to see who would be stuck with the putrid, vomit inducing zombie flavor. Not a well thought out plan since the only place we had to spit them was a receipt in my purse. Worth it though. Less problematic, but disappointing, was realizing that you can’t really see the orange and black filled junior mints in the dark, and you don’t really take bites out of junior mints. We attempted it though, taking eensy, teensy bites of junior mints, while waiting for Maleficent 2 to start (an odd attempt at a child version of Game of Thrones with dragged out battle scenes and a fiery breathing dragon, but I digress). While we figured out the odds that I would get all orange junior mints and my daughter would wind up with soul-crushing black, the trailer for Frozen two came on and I was startled at the observation she made about the characters of Elsa and Anna.

“Elsa has all those powers,” my daughter said. “But Anna doesn’t have anything. And their sisters. Isn’t that weird

She finally got an orange, so it saved me from answering. It startled me because my daughter is a twin and her brother doesn’t have any of her struggles. She can barely run and he plays hockey. She just stopped using manipulatives to use math and he is in honors math. She put her clarinet together upside down and he plays the drums, exceptionally well and without even practicing. She even just had to get glasses and he has 20/20 vision. It’s like a genetic middle finger. The pediatrician even commented on how different the division was. It really couldn’t be more unfair. How does that happen, that one child should struggle completely, and the other have so many gifts?

“It’s bullshit,” is what I probably should have said—a phrase my daughter is fond of since she began binge watching Stranger Things. That one statement pretty much sums up the human condition. The question of suffering. Of justice. The purpose and reason why one life is one of suffering and the other of riches and indulgence

But maybe she just wanted to know why Anna couldn’t shoot ice from her fingers when her sister could.

And it was weird because Frozen used to be my daughter’s valium. She didn’t just like Elsa. She was Elsa. Frozen was to my daughter like the Grateful Dead to a dedicated hippy on a bad acid trip. In short, everything. Soul calming, metaphorical life lessons, a social lubricant. Without Frozen, she was just crazy, having meltdowns and scratching assistants in the hallways. Elsa was her. Her inability to control her temper, her inability to emotionally regulate, her shame and inability to socialize with people. The bad person inside her. She had to sing “Let it go,” loud and regularly. A cognitive behavioral musical. She had frozen pencils, frozen stickers, and a frozen Olaf that was used in every classroom as motivators. Maybe to the conservative right Elsa was pushing the gay agenda, but for us, Elsa was a powering symbol of mental illness

She was Elsa, and love overcame her problems. And for the most part, that has been true. Her meltdowns and her anger are extremely seldom. She is growing up, and Elsa has been re-placed by “El,” from Stranger Things. In Eleven, she sees empowerment, rather than shame, and luckily it gives her a way to process her own differences in a positive way. I’m not sure who she identified with when watching that preview. Elsa, with rare powers and differences that she can’t control. Or plain, simple Anna with nothing special about her but her pure love for her sister

. But I think she may just have discovered the truth about life, that within our lives, we are all both. Unique and Ordinary, Powerful and weak, Weird and Normal at the same time. We are as much a paradox as Zombie skittles, both enticingly delicious and revoltingly disgusting. And life is a crap shoot, sometimes wonderfully orange, and just as often, soul-crushingly black. Elsa, Anna, Zombie Skittles and the Truth About Life My daughter and I just went to the movies, and had made it in plenty of time for the twenty five minute on-sault of previews, so we passed the time by playing the skittles zombie test, tasting the neon Halloween inspired flavors of mummified melon and Blood Red Berry, waiting to see who would be stuck with the putrid, vomit inducing zombie flavor. Not a well thought out plan since the only place we had to spit them was a receipt in my purse. Worth it though. Less problematic, but disappointing, was realizing that you can’t really see the orange and black filled junior mints in the dark, and you don’t really take bites out of junior mints. We attempted it though, taking eensy, teensy bites of junior mints, while waiting for Maleficent 2 to start (an odd attempt at a child version of Game of Thrones with dragged out battle scenes and a fiery breathing dragon, but I digress). While we figured out the odds that I would get all orange junior mints and my daughter would wind up with soul-crushing black, the trailer for Frozen two came on and I was startled at the observation she made about the characters of Elsa and Anna. “Elsa has all those powers,” my daughter said. “But Anna doesn’t have anything. And their sisters. Isn’t that weird?” She finally got an orange, so it saved me from answering. It startled me because my daughter is a twin and her brother doesn’t have any of her struggles. She can barely run and he plays hockey. She just stopped using manipulatives to use math and he is in honors math. She put her clarinet together upside down and he plays the drums, exceptionally well and without even practicing. She even just had to get glasses and he has 20/20 vision. It’s like a genetic middle finger. The pediatrician even commented on how different the division was. It really couldn’t be more unfair. How does that happen, that one child should struggle completely, and the other have so many gifts? “It’s bullshit,” is what I probably should have said—a phrase my daughter is fond of since she began binge watching Stranger Things. That one statement pretty much sums up the human condition. The question of suffering. Of justice. The purpose and reason why one life is one of suffering and the other of riches and indulgence. But maybe she just wanted to know why Anna couldn’t shoot ice from her fingers when her sister could. And it was weird because Frozen used to be my daughter’s valium. She didn’t just like Elsa. She was Elsa. Frozen was to my daughter like the Grateful Dead to a dedicated hippy on a bad acid trip. In short, everything. Soul calming, metaphorical life lessons, a social lubricant. Without Frozen, she was just crazy, having meltdowns and scratching assistants in the hallways. Elsa was her. Her inability to control her temper, her inability to emotionally regulate, her shame and inability to socialize with people. The bad person inside her. She had to sing “Let it go,” loud and regularly. A cognitive behavioral musical. She had frozen pencils, frozen stickers, and a frozen Olaf that was used in every classroom as motivators. Maybe to the conservative right Elsa was pushing the gay agenda, but for us, Elsa was a powering symbol of mental illness. She was Elsa, and love overcame her problems. And for the most part, that has been true. Her meltdowns and her anger are extremely seldom. She is growing up, and Elsa has been re-placed by “El,” from Stranger Things. In Eleven, she sees empowerment, rather than shame, and luckily it gives her a way to process her own differences in a positive way. I’m not sure who she identified with when watching that preview. Elsa, with rare powers and differences that she can’t control. Or plain, simple Anna with nothing special about her but her pure love for her sister. But I think she may just have discovered the truth about life, that within our lives, we are all both. Unique and Ordinary, Powerful and weak, Weird and Normal at the same time. We are as much a paradox as Zombie skittles, both enticingly delicious and revoltingly disgusting. And life is a crap shoot, sometimes wonderfully orange, and just as often, soul-crushingly black.


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“Unconditionally…I’ll love you even if you bite me.”

Mothers-Day

Today my very wild, child bit her 10 year old twin brother because …he tattled on her…for sticking her finger in the dog’s eye.

And it’s only the third day of summer.

She was trying to get a “sleepy” out of the dog’s eye, and was no doubt on the verge of blinding him when both of her brothers tried intervening. Her father and I were pretending to enjoy ourselves on our deck, when we heard the blood curdling shrieks. Her brother cannot help that his voice, at ten and a half, has the shrillness of a soprano Eunuch after having inhaled a tank of helium, so I try not to let it enrage me. The problem is that high pitched shriek could follow the dismemberment of a sibling or an unfair battle move in a game of Call of Duty.

With no ability to discern, we ran to the house with adrenaline pulsing to find our soprano Eunuch in tears, his shirt pulled down revealing some horrific , likely bleeding, injury.

“She bit me,” he screamed.

We thought the biting phase had ended at least, well, months ago. Her phases are usually replaced by equally exhausting and egregious behaviors, so for a quick second instead of being horrified, my sped up adrenaline juiced brain thought, “Ah, biting…we haven’t bitten in a while,” and rejoiced in that small celebration. But that was quickly followed by, “Oh, God damn it, she’s freaking biting again.”

And then all rational, logical thought was stamped out with the screams of our little vampire. Hair flying, limbs akimbo, kicking the screen door like a tiny Linda Blair.

“I didn’t do anything!”

Anything turned out to be a teeth marks deep enough into our son’s shoulder that our pediatric dentist could have used it to mold a new set of child size dentures.

“What the hell is the matter with you?” I yelled.

“I didn’t do it!” my wild child yelled, continuing to pummel our door with her feet.

There was no showing her the injury. No apologies. No sanity at all to be found.

My husband had to find some safe way to get her upstairs to her room, while I bandaged and soothed our little Eunuch.

It turns out his screams were mostly fueled by the horrifying looks on our faces which had convinced him his sister had left him disfigured.

“What does it look like? What does it look like?” he screamed on repeat, until I was almost afraid to look myself.

Our 11 and three quarter son (I refuse to except that 12 is coming) danced around like Mohammed Ali recounting the sordid details. I picked up on “Poking the dog in the eye,” “Told her to Stop,” and “Little Psycho.”

When my husband came back down, we all huddled in the kitchen, directly below her room, listening to the sounds of pounding and slamming coming from above, like refugees hiding from the sounds of artillery.

As my husband and I ranted a post mortem, repeating that we were afraid we would have to send her to live somewhere else, my 11 and ¾ son kept blurting “little psycho” and said he wished she would go live somewhere else. “Will she? Get sent away?”

“She could,” my husband said. “If she doesn’t stop hurting people. But we are going to do everything in our power to keep that from happening.”

That has always been a priority and concern for us, making sure that we keep our boys happy and protected, and at the same time preserving their love and support for their sister.

Sometimes it isn’t easy. For any of us. I have moments of thinking that she would be better off somewhere else.

“You have to remember that your sister has problems with her brain,” I told my boys. “Remember and feel sad for your sister that she is going to suffer, and we have to love her unconditionally.” My voice cracked when I said unconditionally. I am not sure if the boys know that term—they are bright—they pick up on so much on their own. They have none of the struggles of their sibling. They know nothing of the intellectual tangle that their sister drowns in.

But they stopped. And stared at me. With that face that tells me that they know. The game is over. The adult is broken. She is telling the truth. No holds barred.  No bullshit.

In that moment, they got it.

Unconditionally. When our very wild child heard the Katy Perry Song, one of her favorite singers, she said, “This is a little bit sad, isn’t it?”

And then the other day, she asked me what it meant. I told her, “It means I love you no matter what.”

She wanted to know how that could be if you are angry. I realized that maybe she understands far more than I’ll ever know. I felt overwhelmed with all of the internal thoughts I will never be privy to…my husbands, my child’s, my parents… of all of my own, private and soul baring that my heart yearns for someone to dig out.

“But, how can that be?” she asked.

Because you can be angry with someone and still love them.

She pushed and prodded at the fairy glitter play dough we had made together. “I guess,” she said, unconvinced.

I’m not sure how it transferred from my brain to hers to deduce the fact that conditions are rules. Maybe I was projecting. I wondered if she had figured out that conditions were the rules, as in: here are the conditions. I’m certain she has never heard this phrase. Somewhere, somehow, my child who struggles with inferences, was inferring…how could I love her…weren’t there conditions to love? Like not biting? Or hurting people?

She had nailed it. She was calling me out on my shit.

“It means that I love you, even if I am upset with what you did. I can be mad at you for a little while, but I am not going to stop loving you.”

She didn’t say anything. She didn’t even nod. She just paused for a minute. And then went back to coloring. I like to think, in that moment, she got it. And that, in that moment, I promised to make it true.