Please, Don’t Forget About Him

Joseph. Joey.

My firstborn child, my oldest son. I want to talk to you about something. It’s kind of important.

See, lately I’ve been thinking about how, one day, Daddy and I aren’t going to be around anymore. This is a very scary thought for me. I never want to leave any of you behind.

Yet this scares me maybe a little more than it scares most people, because I am terrified about what might happen to your brother Jack.

Of all the things I ever imagined doing as a mother—changing diapers, packing lunches, helping with homework—sitting my oldest child down to ask him to help with his younger brother who has autism when I am six feet under the daisies never once came to mind. I mean, not once.

But that’s autism for you. It is the quintessential curveball—the proverbial fly in the ointment.

You had the skinniest legs when you were born. Like a little baby bird. Jack has always been stockier.

I’m not really asking you to take care of him. Daddy and I have already started planning for that. We aren’t sure what his future looks like just yet, but I imagine some kind of community living.

You see, he will always need some kind of support. I’m pretty sure he isn’t going to drive or manage his own money or live alone.

Please, just don’t forget about him.

I know you would never forget about him.

Please, stay with him.

I don’t mean with him. I don’t expect you to add an extra room to your house or finish your basement or anything like that. Just stay in his life. As you are swept away with career-wife-family-kids-house-dog-responsibility, always remember the boy who toddled behind you and wore your hand-me-downs and never said a blessed word until he was three years old.

The boy who screamed in his sleep and thrashed in the daylight and needed medicine to soothe the demons in his soul.

I know your brothers and sister will help. They will all step up and take him for holidays and tell their kids to be nice to their unusual uncle. They will bake his favorite cake and stock his favorite snacks. They will do their share.

But you, Joey, are the oldest. You are the leader of our family.

It isn’t fair. But fair left the building a long time ago, buddy. As we like to say in our family, it’s not about doing what’s fair. It’s about doing what’s right.

Is it a lot to ask? Of course it is. Most families don’t ask this of one another.

Ordinary families.

Normal families.

We are certainly not an ordinary family.

I don’t know if we’re normal, because I no longer know what normal is.

I know we are a family with special needs.

Our needs our special.

We choose restaurants based on whether they serve Coke or Pepsi products and we carry headphones with us in the car and we talk about autism to everyone we meet.

We will always need to shelter one of our own—to make sure this boy Jack is safe and happy and good.

The thing is, at this point, I don’t think a whole lot is going to change with your brother.

Sure, he’s made some great gains at his new school. The latest round of testing showed his language skills moved up from deficient to below average. He is working on math concepts. He is reading To Kill a Mockingbird on audio book since we discovered he comprehends the story better when he hears it because he has a hard time holding information in his complicated brain.

He can cook breakfast for himself and he’s very interested in current events and lately, he’s learned how to answer the phone but he hangs up right after he says what do you want.

But the essence of who he is—the very core of his spirit and being—will likely stay the same.

He will always battle anxiety.

He will probably always jump.

I think we can all agree he will always swear.

Basically, he will always have autism.

I don’t want to die. I can’t die. I can’t die and leave him on his own in some group home he doesn’t even know how much a car costs who will buy the pancake mix he likes and what if there’s no griddle.

But I will. One day, I will die, because this is how life works. We are born, we live a life full of longing and heartbreak and satisfaction and love, and then we die.

Please, don’t forget about him.

I know. You would never forget about him.

I mean, you are only thirteen months apart. I doubt you remember life without him. The sound of autism has been the tympani of your childhood—the very background noise of your every waking moment.

For the first few years, your physical milestones followed a similar trajectory.

Crawling, walking, climbing out of the crib.

Silly nicknames, swim lessons, sand castles.

Jo-Jo Bear.

Jack-a-boo.

But at some point, it was as if you veered right, and he went left, and now you barely have anything in common at all.

No, that’s not true. It’s not a left-or-right thing. It’s that you accelerated forward while he stayed behind, silently treading water.

You’ve always been so good to him. This is not to say you’ve been endlessly patient. You’ve been frustrated with his tantrums and you’ve snapped at him to talk faster. You complained when we had to leave the movies early because it was too loud for him.

But I think you have been exactly what a brother should be. You have loved him for who he is and helped pushed him farther than I could and explained to the guy running the roller coaster ride that your brother Jack has autism.

Don’t forget about him.

I’m not asking you to live near him. I mean, in today’s age of technology and Face Time and whatever else comes along, it should be pretty easy to communicate long-distance.

I’m not asking you to pay for him, or refill his prescriptions, or take him shopping for clothes.

I don’t know what I’m asking, to be perfectly honest.

I guess what I am trying to say is, please don’t let him languish in some community home while the rest of you move on with your lives and build your families and renovate your bathrooms and make pork chops for dinner.

Check in with him.

Make sure he is remembers his medicine before he goes to bed, and no one is taking advantage of him, and that he stops wearing his winter boots in the spring.

If you need to, buy him a griddle. He likes the electric kind.

Be my memory.

Tell him about how hard he laughed when I fell off the dock headfirst at the lake and how Daddy let him drive the tractor and all the times he made popcorn on Friday nights.

Remind him how much I loved him. Even when I was annoyed or tired, I loved him. Even when the days were so long and I yelled at him and he flipped out because the pillows were messed up on his bed, I loved him.

I know it is a lot to ask.

He would do it for you.

If the tables were turned.

Joseph. I love you so much.

Thank you.