My family doesn’t get out much. You might see two or three of us at the grocery store, the school parking lot, or even at the movies. But you would never know that we have five children, because we almost never go out as a family. Restaurants are not worth it, and don’t even get me started on theme parks and state fairs.
We are like many invisible families with autistic children. We stay home. Read more
Note: This article originally appeared in Prodigal Magazine online in August of 2012.
Last week, I put on my strict daddy face and stared down my daughter from across the table. “You’re nine years old today. This has gone on far enough. You must STOP growing!”
She grinned back at me and repeated the word “nine” at least seventy-four times. I slumped into a puddle of self pity and shut my ears.
It is a game we have played for years. When Jenna turned two, she traded her onesies for princess dresses, and I missed the good ole days. Not long after, the dresses were nixed for cowgirl jeans. Before I knew it, the whole thing spiraled out of control, and now I hardly recognize my little girl. She’s putting feathers in her hair, drinking mochas, writing grown up sounding stories and obsessing over Phil Mickelson (Yes, the golfer. I’m as puzzled by this as you are.)
So I tell her I want her to stop growing up. But I am lying.
Because as hard as it is to watch your kids grow older, it is infinitely harder to watch them stay the same age.
I should know. I have a six year old with Autism.
Jackson was diagnosed when he was three, but we knew something was wrong for a year before hand. He had been a normal boy, laughing and interacting with his sisters, learning new vocabulary and throwing it in whenever he had the chance.
Then he hit a wall. I cannot remember exactly when he regressed, but I remember that he stopped exploring. Stopped playing. Stopped looking us in the eyes. Everything he had learned about his world was gone.
Specialists have worked with him for the past three years. We enrolled him in a school with autism experts. We put him on a special gluten-free, casien-free diet. We bought him an iPad for the special education apps. And we have loved the cheese out of him every day.
In some ways he has improved. Unlike many autistic children, Jackson is very affectionate and good natured. He actually enjoys being with us–something we could not have said three years ago.
But in other ways he is still three.
He does not speak to us, except to ask to go outside, get a snack, or to play with our phones. These are usually two or three word sentences. Some days he remembers his words, but most days, he just pulls our hand to the thing he wants, and we have to remind him what to say.
“I… want… chips… please…”
How many times have we taught him that sentence? Hundreds. No exaggeration. He will learn it, and the next day, we have to teach it all over again. I feel like Adam Sandler with Drew Barrymore in 50 First Dates!
The most frustrating aspect of this is that my wife and I are both skilled teachers. We thrive on boiling down difficult concepts into concrete ideas that are easy to absorb. Our son, for whatever reason, simply cannot absorb language. We’ve thrown everything we have at him, and very little seems to stick. The experts are just as baffled as we are, and there is no answer in sight.
Early on, the cycle of hope and disappointment nearly sidelined me as a dad. I had to let go of all my visions for the future, to clean the slate and start engaging my son with real love–the kind that is full of patience and empty of any performance requirements.
In short, I had to learn to love like my Father.
G.K. Chesterton wrote about God’s child-like ability to exalt in the monotonous. God makes the sun rise, and then, like a little boy being tossed into the air by his father, He says “do it again!” It seems the Creator does not get bored as easily as I do.
I get tired of the duplicate lessons that teach the same words over and over again. But in moments of more relaxed clarity, I smile to myself. Is it really so bad to have to teach my son to say “I want chips please”? After all, it is short and simple, and unlike more complex petitions with multiple subordinate clauses, it always earns a salty, delicious reward.
“I want chips please” is a perfectly good sentence, and I look forward to teaching it to my son again tomorrow.
Jackson woke up this morning at 6 with a drum solo. It was pretty awesome. He started by beating his hands on the sliding glass door, waking his sisters from their living room slumber party. I smiled. He really does have great rhythm. Then he turned the microwave into a bass drum. I got up.
I took his hand and led him to the conga drum next to the TV and said “Dude, this is a drum. Play this.”
He scrunched up his nose and smiled. Then, he played a masterful hand-drum concerto. It lasted for five seconds. (The glass door is so much more interesting…) Read more
I just finished reading a great post entitled “THE AUTISM DADDY RELIGOUS MANIFESTO.” The anonymous blogger has a nine year old boy with severe autism–worse than my son’s, whose is formidable enough–and was put off by trite religious platitudes that were supposed to make things better. He is not a believer, but he is honest, and I want to stand next to him in addressing this “comforting” statement to autism parents:
“God never gives you anything you can’t handle.”
First of all… really? Are we still using that line? I had hoped it would go out of fashion with TestaMints. Because nobody in the history of pain has ever been healed by religious denial. Ever. Read more
The old woman frowned at the moping beauties in the king’s garden. For a moment, she almost felt sorry for them. On any other night, they would have had a fighting chance. The Duchess’ daughter was lovely enough to incite a riot with her scandalous gown made of red rose pedals. And the Vizier’s girl—the one wrapped in thin layers of golden lace—she might have had a dozen knights preparing to quest on her behalf. Even the poor merchant’s daughter in the deep purple dress was alluring enough to win for her father a dowry as tall as the castle walls.
Poor girls. They must have been so confident earlier in the evening.
But now she was there.
At first they called the girl arrogant because of her dress. Then they called her fake for pretending to look so innocent. But at last, they settled on stupid, because she appeared to have no idea who she was dancing with.
The old woman doubted that. The topic must have come up. The Prince had greeted her like an excited hunting dog the moment she arrived, and the two had not stopped dancing since.
The discarded maidens complained that it was the dress and not the girl who had seduced him. The thing was made of shining white silk, covered with hundreds of sparkling, transparent stones; stones just like the ones hanging from the queen’s own ears. No one dared whisper the word “diamonds,” for they all knew it would cost the wealth of two whole kingdoms to mine that many stones.
Yes, they all decided after another full hour of spiteful whispers: It had to be the dress. There was no chance the girl’s figure could actually be so perfect. The dress merely pushed and pulled in the right places. Her eyes only looked like glowing emeralds because of how the dress sparkled. And those loose strands of deep blonde hair only bounced so gaily because… well it had to be the dress’s fault somehow, or maybe it was those loathsome glass slippers!
“I do good work,” the old woman said to herself, swaying gently as the waltz came to an end. The prince was bowing, and the girl was giving an awkward curtsy–the most adorable awkward curtsy that ever was. But when she looked up, something was wrong. Her eyes were puffy, and she turned away from him.
The gaggle of maidens held their breath.
“I think she’s angry,” the Vizier’s daughter squeaked. “Let’s go!” The maidens stampeded down the steps and around the fountain. In a moment, the special girl was missing in a see of colored lace.
The old woman did not move. “I shouldn’t have come,” she whispered, pulling her brown hood tightly over her head.
The Prince was growing desperate as the mob of girls surrounded him. “Miss! Miss, where did you go?” He called for his guards to give him space, but it was too late. The merchant’s daughter had him now, and she was lifting him off his feet. The old woman felt her stomach tighten. Where had the girl gone to?
“Godmother?”
The old woman jumped at the small voice, which came from behind her. It was too late to hide now.
She put on a motherly smile and turned around. “Yes dearie? Oh, you found me. I was just enjoying the —”
“Godmother,” the beauty repeated, “It’s… it’s not enough time.”
The godmother looked up to the glowing yellow clock on the spire. It was almost twelve already.
She sighed. “I’m sorry, dearie. It must be midnight.”
“It’s not fair,” the girl blurted out.
“Every night must end. How else will you find your happily ever after?”
“Happily ever after? I don’t even know happiness now?” Tears began to gush from her perfect eyes. The pale skin of her cheeks turned pink. “How can you do this to me?” the girl balled. “You are too cruel.”
“Come now,” the godmother whispered, “How can you say that?”
“I can say it easily, because it is the truth. And a princess must speak the truth, even if she is only allowed to be a princess for a few lousy minutes on a hot evening.”
The godmother raised her eyebrows but said nothing.
The girl fell to her knees. “Godmother, just a couple of hours.”
The godmother reached down and to raise the girl’s chin and said, “And when would it be enough? When would you be satisfied if not now?”
The girl pulled away. “If I had your powers, I would use magic without limits. The only true gift is a gift that does not end.”
“Dearie, you do not know what you are saying. The limit is part of the gift.”
The girl ignored her. “I would use magic every moment. Just for the sheer joy of it. Or maybe it is not a joy to you, but it is to me.” At that, she began prying the shining stones from her shining white dress, one after another, and tossing them on the ground.
“Daughter, what are you–?”
“Don’t object, godmother. You would only care if you actually took delight in working your miracles. But you don’t, so stop pretending!”
The godmother wanted to hold her. Wanted to fall down next to her and fold her hands over the girl’s shaking fingers, but it would not do. The girl needed to be answered.
“Daughter, I do delight in magic. I delight in every gift I have given you. Can you look into my eyes and say the same?”
The girl did not look into her eyes, but she answered, “Of course I do!”
“You are lying to yourself, daughter. This whole night is a gift. If you really thought so highly of magic, you would not haggle like one who has never experienced it.”
The girl stood up and took her hands from her face. It looked as if her tears had been running up her forehead and her nose. Her eyes were puffed and red, and her plump, red lips convulsed.
“Then I will pay you back for all you have done for me !” she shouted, reaching down to remove a glass slipper. She did not even pause to take aim, but hurled it straightaway at her fairy godmother. It glanced off her and fell to the ground, shattering into thousands of tiny shards.
“You are not real to me! I do not even believe in fairies!” she wailed, then crumbled into a puddle and sobbed so loudly that her prince called out to her.
“Miss? Miss, where are you?”
The godmother disappeared into the wind before the young man came into view around the hedges. The girl was already on her feet, fleeing down the great stone steps. “I’m sorry,” she cried over her shoulder. “I must go. I have to go now!”
“Wait,” he called after her. “Don’t go! I don’t even know your name!” He chased her down the steps and onto the road, but he was too late. The girl was already climbing inside her porcelain white carriage. The clydesdales wasted no time pulling their passenger away at lightning speed.
The godmother reappeared behind the hedges and watched the prince drag himself back up the steps. His face was full of defeat and confusion.
The old woman sighed as she looked away from the prince to the broken shards that lay at her feet. Was it worth it? Would it do any good at all? She forced a smile and reached in her boot where she kept her magic wand. It would be a risk. But then, it was always a risk.
GK Chesterton proposed this scenario in “The Ethics of Elfland,” the greatest chapter of his classic “Orthodoxy.”
Special thanks to my brother-in-law, the crazy-talented Chris Audet, for the original illustration.