I enjoyed talking to you tonight, and meeting your little guy.
While he darted in and out of line and dumped the Tic-Tacs all over the floor, you explained he has autism.
I got very excited because I also have a son with autism. His name is Jack. He is sixteen.
The hard part about raising a child with autism is you can’t let anything slide.
Oh, it’s tempting! It’s tempting to tell yourself he has a diagnosis and it’s sad and he should be allowed to get away with a thing or two.
You can’t though.
You might have to remind an undiagnosed child thirty times to use his napkin, or stop jumping on the couch, or get his backpack for school.
Multiply that by 2,928,031, and you are in the ballpark of how many times you’ll need to remind a child with autism to do those very same things.
It’s not that he forgets what you’ve asked, or wants to disobey you. It’s that he is listening to the inner track within his mind.
You see, his brain is busy warding off the wolf of anxiety, or memorizing train schedules, or wondering how many times it has rained since 1992. He gets distracted.
In other words, his priority is the compelling inner world of autism, instead of the random constructs of manners and social interactions. Constantly, autism beckons—all crooked finger and sly whisper. It is difficult to resist.
So what, you might say. Let him do what makes him happy.
I’ve said that, too.
I’ve said it to myself after he threw his dish on the floor for the thousandth time, or when he hoarded all the pillows at bedtime.
I’ve whispered it to myself after I walked him back to bed over a dozen times a night.
I think it to myself when I sit alone at my laptop, long after everyone has gone to sleep.
So what if he eats with his fingers and he never wipes his mouth? Who cares if he can’t stand in line for more then thirty-four seconds? It doesn’t matter.
It does, though. It matters.
The sleep and the napkin and the standing in line are all building blocks, you see. They are the foundation beneath a house of possibility.
Do I care if my son fits in with everyone around us—if he believes the paradigms our society follows are meaningful, or understands why you shake hands when you meet someone for the first time?
No. That doesn’t matter to me in the least.
What does matter to me is that he has the option to fit in, if he chooses. I want him, maybe one day, be able sit across the table from someone he thinks is special, put his napkin in his lap, and reach for the fork.
This might be the hardest work I have ever done.
It requires consistency, and patience, and a commitment to future goals that are hazy at best.
I posses none of these skills.
I am not consistent.
I am not patient.
I have, however, learned to look for a future I cannot quite see, or touch.
One time we were at a party and 8-year old Jack kept trying to take his shirt off and one of the guests said, “Who cares? Let him do what he wants. Let him be happy.”
He might’ve well said, “Your son isn’t going anywhere in life.”
It fueled me, is what I am trying to tell you. It inspired me. I turned to my boy and I coaxed the shirt over his head. I reminded him we needed to keep all of our clothes on for dinner.
I helped him thread his arms through and I tugged it down to his waist. With the fabric between my hands, I was telling him one thing only.
I care about you.
I do. I care about him. I care about who he is, and who he may become.
As a mother, this will challenge you.
People will doubt you.
You will doubt yourself.
Turn all the doubt and criticism into your own personal fire.
Teach this child.
Teach him about expectations and responsibility and the concept of right from wrong.
Teach him how to stand in line, and sleep through the night, and eat a meal at the table.
Teach him how to bake cookies when his father has a bad day at work, and how to change a lightbulb after it’s gone dark.
This is the way you build upon the foundation, and create a house of patience, and willpower, and light.
Stand up for him.
Teach him to reach.
Teach him to reach for all that is rightfully his.
Teach him how to reach for the sky.
Scorch the earth when you must, and feel the soft glow when you can. Either way, live without apology.
You got this, autism mama.
I love you with my whole self.