Dear Ben, For a Boy Who Has Two Brothers With Autism

Since today is the last day of Autism Awareness Month, I thought I would share a post a wrote a while ago. We have four children. The oldest three are boys. The eldest, Daniel, (age 11) and youngest, Gideon, (age 8) have autism. Ben, age 10, does not. Our youngest, age 4, is Katherine. Ben in a very special situation. I often say he has the attitude of a middle child but the responsibility of a firstborn. Two years ago, I wrote Ben this letter:

Dear Ben,

In the past year, you’ve been asking a lot of questions. A few months ago, we sat around the dinner table and you quietly leaned over and asked, “Is Katherine okay, Mommy?  She doesn’t have autism, right?”  Your sweet face was so hopeful . . . and scared.  You were afraid of the answer.

It broke my heart a little.”No, honey,” I explained.  “She’s not showing any signs of autism.  You have a perfectly normally developing, bossy, chatterbox little sister who will annoy you for years to come.”

“Good,” you said, smiling and your shoulders seem to lift just a bit like a weight had been taken off.

A few weeks later, you were talking to me about big vacation plans you have.  “When Gideon doesn’t have the autism stuff anymore,” you began,  “we can go camping or maybe to Disneyland.”I sighed and, yes, my heart broke a little more.

“Ben,” I said.  “Gideon and Daniel will always have autism.  It doesn’t go away.”

You stared at me for a minute with those big brown eyes.  “But Daniel used to be like Gideon and now he’s better.”

“Daniel has done very well in therapy but Gideon is a different person.  I can’t tell you if Gideon will be different in a few years.”  I don’t want to say these next words out loud to you or to anyone because I am so scared they are true. “Gideon may always be exactly like he is today.”

Your whole body seems to droop.  My sweet boy, I think you carry the whole world on your shoulders sometimes.  I hate that you feel that way.  “So he might not talk too much?”

I shook my head, too afraid I might start crying if I said it.

“Will he always have to wear pull-ups?”

“I don’t know, honey.”

“Is he always going to put weird stuff in his mouth?”

“Maybe.”  I felt helpless because I can’t give you the answers you want.

I’m a mom.  I’m supposed to make you and your brothers and your sister better.  I’m supposed to kiss boo-boos and apply band-aids and dole out popsicles and everything will be just fine.  But, Ben, the truth is I can’t fix everything; I can’t fix this.

I know you’re sad because your brothers have autism.  I know you want someone to play with you and ride bikes and kick the soccer ball around.  Some of those things your brothers can do but, I know, a lot they can’t.  I know that sometimes our family can’t go places because it’s too overwhelming for your brothers and so you miss out on rodeos and rice festivals and amusement parks.  I know that sometimes we can’t go on big vacations or even to a movie as a family because it’s hard for your brothers or too expensive.  A lot of our family’s money goes to pay for therapy.

I know it makes you mad too.  You want to yell and throw things sometimes.  You slam the door when you go outside because you feel like we don’t pay enough attention to you or you feel slighted. You just want your brothers to be like other kids.

I can’t make that better for you.

But I want you to know that your dad and I do notice you and we are so proud of you.  God could not have made a better brother for Daniel and Gideon.  He gave you something that many of us don’t have a lot of; He gave you compassion.  I mean, real, true compassion.  Every one your teachers have pointed it out to me.  “He’s the most compassionate six-year-old I think I’ve ever seen,” one of your teachers told me.  Do you know how big my heart was that day?

“Everyone is my friend, mom,” you’ve told me before and it’s true. I watched you once, when you were at your kindergarten Christmas party, see a little boy with special needs sitting by himself.  You sat next to him and helped him open the present in front of him and read it with him.  No one told you to do it.  You just did because that’s who you are.  I know that you would never let anyone who people think are different get picked on.  You would stand up and defend someone who couldn’t defend themselves. You understand that sometimes people are different.  Maybe that’s part of because of your brothers and maybe that’s just part of you.

Don’t ever lose this.  Don’t ever forget that everyone deserves kindness and compassion.

Sometimes being in our family isn’t easy but we have fun too.  We laugh a lot and your brothers never seem to mind if you pick the movie we watch.  You whisper to each other at night in the bedroom you all share together or sneak the light on and read books (Yes, I know about that!). You love jumping on the trampoline together or running through the sprinkler in your underwear or chasing each other around the house.  You all love to annoy me together!

I know our family is different from most of the people we know.  I know we ask a lot of you sometimes.  I know sometimes you will be angry and frustrated and sad.  (Mommy and Daddy are too sometimes).  I know you’ll wish things were different some days.

But I want you to know that we are so proud of the young man you are becoming.  Keep being who God made you to be in the family God put you in.

I love you so much,
Mom