I Am His Whole World

Autism parents put a million details into the care of their beloved children. But what will happen when those parents are gone?

By Debra Rich

My son Zack is profoundly autistic and nonverbal. Zack actually has a lot of “words” for someone who is considered nonverbal. I understand most of what he says, but for others, not so much.

Taw ee eat. Daw-wed. Dee-dee nuh-ets. Baw-doo-doo. Eet-woy. He is saying: “Time to eat. Salad, Chicken nuggets with barbecue sauce, French fries.”

“Oh, you want to watch TV. What do you want to watch?” He says, “Wah Ee-duh Bee-guh.”

“Oh you want Charlie Brown Easter Beagle. OK watch Easter Beagle.”

My son does have a mind and a voice, feelings and ideas. He loves to eat. He loves to go places and do things outside like hiking. He loves music and watching his favorite shows. He loves to see his mentors. He has a life full of meaningful places, activities, things and routines and surrounded by the people who love and accept him and who he recognizes as part of his world. 

But what happens when we are gone? What happens to the world we have all built for him?

Who else will take him to “Cah-go, awt dawk, mah-too, doo-duh yoot-bee?” Will they know he is clearly asking for the famous Costco hot dog meal with mustard and root beer soda? 

Who else will know his favorite part of the mall is the escalator and donuts from China King?

Or that “Carly” is his name for his “Big Train, Little Train” video? (after the little girl in the video)

Or that “It’s broken” (ee bwoh-bway) is his name for his broken but cherished fidget toy?

Of course I can write a training manual for all this stuff. It will be a long one. I’ll even throw in a phonetic list of all his words and phrases, if anyone should care to read it. But then…

Who will take him to Lake George for vacation? Or take him hiking on the Appalachian Trail? Or to climb a mountain? (Would a group home risk such an adventure?)

Who will order his digestive enzymes and probiotics which aren’t covered by insurance and make sure he takes them with every meal and snack so that he doesn’t end up with “boo-boo belly” and messing his pants? Or follow through on his diet and exercise so that he doesn’t end up obese? 

Who else will buy the softest jammies and underwear and coolest graphic t-shirts with no tags and comfy but stylish track pants and easiest-to-pull-on socks? Or make sure his undies and socks aren’t bunched and causing discomfort?

Who else will snuggle with him before bed and kiss his forehead and make him feel safe and loved so that he can drift off to sleep? Even at 20 my boy still requests mommy cuddles. 

The family on Cat Mountain, Adirondack Park, Lake George region, New York state.
The family on Cat Mountain, Adirondack Park, Lake George region, New York state.

Who will keep him from regressing to SIB and aggression and incontinence?

Who will make sure that his life has meaning and purpose and joy?

What will happen to my son’s voice once there is no one left to translate?

He has no siblings. He has no family nearby. His friends are all young adults like him.

There is no one else to fill that role but me. A minimum wage baby-sitter and some chicken nuggets are no replacement for love.

By the way, my heart breaks for all those parents who are denied the joy of talking to their children.

But I am his world. I am his whole world. 

Debra Rich is an autism mom who lives in Connecticut with her son Zack. In addition to piecing her son’s very complex autism puzzle, she edits and test-solves puzzles for a living. She credits her love of decoding and encryption for her success in cracking some of Zack’s words!

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.