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On a daily basis, I find myself wondering if I’m going to screw-up my oldest son.
As I’m writing this, I’ve just led him by the arm to bed, as he laughed at me. I honestly think he had no idea that I was angry. Or maybe he was just being a typical six-year-old.
Then again, Avaric isn’t typical. And I never really ever know how he is interpreting my emotions, my cues or my tone of voice. Such is the world of being a parent to a child with Asperger’s Syndrome.
I’ll be real here, on this particular night, my patience was not my virtue. I walked him back to bed half a dozen times. Even my husband couldn’t get him to stay down.
Getting through to him can be an ordeal. I’ve read all the advice on how to discipline a child with Asperger’s. I know that children with Asperger’s Syndrome don’t understand body cues or verbal intonations. I know that what I find infuriating, he might be interpreting as playful fun. I know I’m supposed to be patient, that the experts would say that I should never threaten to take away privileges because he would have no clue what he did wrong to lose a privilege.
But I’m not always supermom who does it by the book. Some nights, like tonight, I am exhausted. I am at my wits end. I have exhausted my patience, and I just want him to go to bed.
Tonight, I am hating the “experts” and their advice. I hate them, because I feel like a damn, lousy failure of a mom. Yes, tonight I have yelled. And threatened to take away privileges. I’ve even bargained.
On days like this, I feel like I’m doing it all wrong. I worry that my own maternal meltdowns are scarring him for life. That I’m scarring myself more for not being the mom I should.
I’ve learned from experience that Avaric thrives on a consistent routine in most areas of his daily life. In the morning, he eats breakfast first then he takes his bath. Rarely does this ever change.
Avaric always has to have his bath before his brother. For bedtime, covers must be tucked-in tightly, and Avaric must always be told the same three things:
1. The chances for any type of rain or severe weather (it’s best if there is 0% chance, as the arguments begin when the percentage goes up).
2. If he has any warnings. In other words, can he get up without a consequence (this rarely works, but I still have to address it).
Finally, I must always tell him that his closet is closed and that his curtains are drawn. The routine has to be followed.
Some nights, the routine also includes the presence of a certain stuffed animal or toy. For a while he used to only go to sleep if the moon on his wall was on (yes, he has a light-up moon in his bedroom).
Children with Asperger’s can’t handle a broken routine. The patterns are comforting. They must always know what comes next. For Avaric, broken routines mean a violent tantrum. And I do mean violent.
He has no idea how to just verbally express anger. He’s bottled up. And when the top pops off, the explosion ensues.
I have a small scar on my face where his nail once dug into my skin. I think at the time he was upset because I made him oatmeal for breakfast instead of his routine waffles.
Living with a child with Asperger’s Syndrome is a little bit like living with a little General. Or a small dictator. You find yourself sometimes bowing to his demands. Bowing, because you know that the fight isn’t always worth it. You choose your battles.
The troubles, the battles, really come when his little brother doesn’t understand the ritualistic routines. Or when little brother wants to invade his brother’s room during his “alone” play time.
Avaric likes to play by himself a lot, and he likes scripted play. Every day after school, he comes home and then shuts himself in his room to teach his own class. Psychologists have told us that this is how Avaric processes his day. I find out about his day through his reenactments.
When he was younger, right before he was diagnosed, I used to find the scripted reenactments disturbing or even maddening. Watching him is like watching a movie set into motion. But you can’t hit pause. You can’t just stop him.
His play is a routine. And the only way that I have found to get him out of his play routine -- to say…have dinner -- is to tell him to “send the kids home.”
Like most kids with Asperger’s Syndrome, he doesn’t understand the “reindeer games” of childhood. While he likes other kids, he doesn’t really know how to interact with his peers. He has been known to act as a teacher to his fellow classmates, because he didn’t understand the role of being a friend.
To him, a friend is anyone in his class who follows the rules of the school. Rules are very important to him. And if a “friend” isn’t following the rules, then he will go into full-on teacher-mode to ensure that they abide by the rules.
Avaric doesn’t understand that a friendship is a bond and that being a good friend goes beyond saying “hello” or just being kind or following the rules. Friendship to him does not involve birthday invitations or social functions.
This year, however, has been the first year that he has really started to show interest in a select group of his peers. I give full credit to his outstanding teachers who have helped him make strides socially.
Each morning, Avaric reads the same note given to him by his speech-language pathologist. The note reminds him of his role at school. He is a friend. Not a teacher.
While Avaric’s Aspergian nature tends to be ruled by routine, he’s also ruled by his intellect. Living with Avaric is also like living with a small Sheldon Cooper.
Yes, he has all of Sheldon’s quirks. His hugs are awkward. He obviously doesn’t understand social cues or innuendos. But his mind. His mind is so wonderfully complicated and complex that I often find myself thinking of my six-year-old as an adult.
Avaric never learned to read. He was never taught. But at age three, he was reading fluently. Seemingly out of nowhere. He could put together an entire map of the United States and tell the capital of almost every state. At age four, he was doing math by the clock. “Mommy, in 11 minutes, it will be 12:30.”
When he was four, Avaric also wrote his first book. The title was “Maiden at the Park.” Maiden was the name of his Beanie Baby ladybug.
And don’t get me started on his crazy computer literacy. I often call him in when I screw-up my computer. Psychologists call his abilities “splinter skills.” I call his abilities “gifts,” and I call the psychologists assholes for cheapening my son’s abilities.
Living with Avaric is an adventure. An endurance trial. A constant test. He’s put me in situations that I could never dream of being in…like when he read the order menu on our cable system and decided to order an “adult” movie for his parents, because, you know, we are adults. That was fun to explain to the customer service reps at Charter.
But he has also left me speechless with his sweetness. Notes, written by a small four-year-old hand, proclaiming his love for his parents. And a note, written at age four on the back of his door during his time-out punishment, that said “Mom’s mad at me.”
I wanted to keep that forever. Not because I wanted to remember being mad, but because I was so struck by the fact that a small child, who should only be able to write his name and the alphabet, could write a perfect thought. Even if it was on the back of his door. In permanent marker.
Asperger’s Syndrome doesn’t come with a manual. I wish it did. For a time, I thought the doctors had all the answers. Infinite wisdom. That was when we were searching for the diagnosis.
I remember sitting across from the best pediatric neurologist in St. Louis. I waited months to see him. Months for his wisdom, months for a diagnosis. His wisdom was to tell me that my son was so high functioning that the public school system would not help him. That doctor was wrong.
I think of that meeting often. And, while I will always worry about doing things by the book, I know that in the world of my son, sometimes you have to burn the book. Say “Screw the book.” Try to keep it together.
And follow the routine, or suffer the wrath!