Henry, come on, don’t cry. Come here, sit on my lap.
No? You don’t want to? You’re too big to sit on my lap now? Okay, just sit next to me here on the couch. Try to calm down, and tell me what’s wrong.
Jack said what? Well, that’s actually—no, no, it isn’t funny, you’re right. I’m sorry.
I know, I know, you want to be called Hendrixon. I noticed that’s how you started writing your name on all of your spelling quizzes and math sheets.
Let me guess—Jack said he will only call you Henry because Henry is on your birth certificate and that is a legal document and you can’t change something that is legal because legal means the law.
I’m sorry Henr—I mean Hendrixon. I’m sorry you’re frustrated.
You know how Jack-a-boo can be. He likes the rules. He’s exact—he’s literal.
What does literal mean? Well, means that if Henry James is on your birth certificate, that is your name and that is final. This is how is mind works.
The funny part is Jack’s birth certificate actually reads John Michael, but we call him Jack. We always have. I don’t think he understands his real name is John.
Where are you going? No, no, don’t tell him that. I don’t want to get into it about his name right now. No, do not call him John. Please, I am begging you, just stick to Jack. Come on now, come back here and sit with me.
I want to tell you a story.
I know you don’t remember this, but when you were about a year old, I took all five of you to the grocery store to pick up a few things for dinner. It had snowed lightly that afternoon, and while I was loading the bags into the car, the shopping cart began to roll away into the parking lot because the pavement was kind of slippery. You were sitting in the front.
In a split second, before I could even react, 5-year old Jack darted out and grabbed the handle. He pulled you back to me. He was so fast—so certain, and sure—that it took my breath away. I can still see the back of his red jacket flashing against the snowy backdrop.
The thing is, Jack doesn’t like change. For almost eight years, you have been Henry to him, and to us. Now that you decided you want a different your name, well, it might take him a while to adjust.
Well, yes, it is because of his autism.
Yes, he was born with it.
I don’t know if he’ll get married.
I don’t know where he’ll live when he’s a grown-up.
It’s hard to say if he’ll drive a car. Maybe. I know he wants to but I’m not sure it’s possible. Yes, because of the blinkers and the speed limit and parking in tight spots. But also because of something called a detour, where if he had to take a different route because of the weather or construction, he would get all discombobulated and nervous.
These are all great questions—what? What did you just say? You wish he was normal? Huh.
I know. It’s not easy, being Jack’s brother. It’s not easy hearing him jump around every morning and listening to him rock in his bed in the middle of the night.
It’s not easy when he screams and cries. It’s scary.
Now don’t say that. He doesn’t get all crazy. Well, okay, sometimes he does.
He does ask a lot of the same questions over and over. Why does he do that? It’s hard to say, buddy. I think his brain moves very, very quickly, and thinking and talking and asking about one particular subject—like say, Disney movies—is his way of slowing his thoughts down a little.
Autism has always been a part of your life. Before you were old enough to point finger and name it, you knew what it was.
When you were born, Jack was four years old. It was like living with a tornado. One moment, he was fraught with gusts of wind and cold, wet raindrops. The next, he was withdrawn, quiet—the uncertain eye of a chaotic storm.
He loves you. I am telling you this, Hendrixon, because it may not be obvious. His love is not a lion’s loud roar or a zebra’s fast hooves. It’s more like a mouse tiptoeing across the room to sneak a piece of cheese in the night. It’s quiet, and hushed. You have to watch for it—you have to look for the footprints in the snow.
I’m not sure how to explain this to you, but autism is good for us. It has changed us. It has made us the people we are today.
See, I think our life is like a vibrant, colorful tapestry. The front side is the pretty combination of blue and green and red and yellow. It makes a picture.
If you flip it over to see the back, well, it’s a mess. There are big, uneven knots and crisscrossing threads and maybe even some loose ends.
Most people would rather look at the front. They like to admire all the colors and the smooth, gossamer yarn. Very few of us realize just how important the back of the tapestry is.
The knots are strength.
The crisscrossing threads are all the little roads we follow along in our lifetime; pathways and trails full of hope, and fear, and anticipation, and excitement. Some of the trails are silky and smooth, while others are bumpy and rocky and slow.
And the loose ends? Well, those are the questions we ask ourselves every minute of every hour of every day.
How did he get it?
Will he always have it?
Will he get married?
Will he drive a car?
What would it be like if he was normal?
The colors of your heart aren’t permanent. Today you are red with frustration. I know. I have felt the same. Yet tomorrow, you may know the brilliant yellow of surprise, or the deep blue hue of sadness.
And the day after that? Well, that could be the day you see purple swirled together with green and pink and red and gold. What’s that? What does the swirly purple color mean? Well, buddy, it means there is no such thing as normal.
Not everyone can see the colors the way we can. They are autism’s ultimate gift to us, and this makes us very, very lucky.
Baby. That’s what he called you when you were born.
Every time he passed you in the bouncy seat or in the car seat or in my arms, he would reach out, and very gently he’d touch your hair with the tips of his fingers. Softly, he would whisper baby.