The Mighty Logo

The Chaotic Routine That Became My Family's Strange Source of Comfort

The most helpful emails in health
Browse our free newsletters

When my autistic sister, Elyse (we call her “Deese”) was younger, she had these huge peaceful eyes, like those big liquescent orbs you see in Disney characters. Her skin was pale and freckled, and when she spoke it came out monosyllabic, like the pronouncement of an oracle.

When Deese got older, she stopped speaking in one-word riddles. The peace had largely fled from her face, and the sheen to her eyes now seemed to indicate irritation rather than omniscience. Her once-familiar utterances were replaced with different sounds and, increasingly, by screams. She began to have tantrums more often. It was as if all the frustration that she had built up for years was beginning to leak out. At the slightest provocation, she bit her arm, flapped her hands and stomped so hard standing picture frames fell over. Puberty had brought more wrath into her frustration. Any remaining spirit of compromise was gone.

Deese used to be somewhat tolerant of my mom combing her long hair, but at this rebellious stage, she would no longer accept the attention it required. In the morning, they could be heard in the bathroom together, my mom saying, “Now hold still,” and Deese screaming beyond the limits of human endurance or lung capacity.

“Oh, Leese, you’ve got to get the tangles out.”

My mom has a much more pronounced Michigan accent that anyone else in my family and as a result she drops the initial “e” on words in which it is followed by “l-e.” For example, “electric” becomes “‘lectric,” “eleven” becomes “‘leven” and “Elyse,” to my mom, when she is speaking directly to her, “Leese.”

This is how the two of them sound every morning getting the tangles out:

“Oh, Leese, put your hands down. FFFFF-FFFF-FFFF (the sound of a spray bottle) ARRGHHH! I’m just spraying detangler! FFFFF-FFFFF-FFFF Now, quit tha—ARRGGHH! CLUNK. Oh darn, now you made me drop the brush! I said hands dow—ARRRGGGNN! Leese Anne, you calm down or you won’t get—HHHHMMMPPP! (the sound of a scream muffled by an arm bitten in anger) Stop that. No biting. ARGGHH-HMMPP.”

Throughout this conversation, Deese is also clapping her rigid hands together, hard. These claps are very different from applause. Applause comes from hands cupped around each other, fingers curled. Deese’s angry claps come from rigid, praying hands, held so stiffly the fingers are bent slightly out. When she claps, her hands are like rams butting heads.

There’s so much detangler in the air. I can smell the soapy-sweetness of it from down the hall in my room even though the door is closed. It’s a dull smell, like the smell of an old vacuum or car exhaust on a cold day.

The radio is on WKPR, an AM station that only seems to have one announcer whose voice sounds like a car battery. Every hour, WKPR plays 5 minutes of weather and 55 minutes of commercials. The galvanized voice with a nasal mid-western drawl rambles on about insurance and the ice cream parlor’s 25 flavors. There is static hum behind the announcer. His voice sounds like something from the past — bland, but somehow wistful. The radio’s volume is always turned all the way up to be heard over Deese’s screaming, but when the weather report starts, my mom impulsively reaches for the volume.

“AGGGGHHHH! Quiet, Leese. I need to hear the weather. ARRGGGH! Going to be some rai—ARRGHH! Shhhh. Tomorrow’s looking a litt—ARRRGGG-HMMMPPHH! Quiet! 45 degrees and—ARGH! –‘s all the weather for—ARGH-HHMMPP! Oh, darn it, Deese. You made me miss the weather.”

The radio goes back to 55 minutes of commercials. My mom sets the radio back on the counter and tries to sing something to make Deese laugh. The only songs that have ever worked in this capacity are ridiculous improvised ditties, for example, “Breathe Right na—sal strips/ you put ‘em on your nose/ you put ‘em on your nose!”

But this morning, Deese is too worked up to even notice that my mom is singing, much less be entertained by it. My mom, also accustomed to these mornings, pays little attention to Deese’s screams. She gives up the song and begins to think out loud, as she often does.

“ …Taxes to the post office,” my mom mutters to herself loud enough to be heard over Deese’s screams. “…Broccoli. I have to find…” These thoughts are punctuated by screams. “ArrGGhhH! HHHMMMPPP! ARRRarrrARRR! HMMMMP!”

Somehow mitigating the contrast between my mom’s calm recitation of her grocery list and Deese’s agony, there’s the WKPR announcer continually saying the word “Jackson” in each commercial in a way that sounds like there should be a “y” in there somewhere. “Jaykson’s own… Jykson’s best… Here in Jyakson.”

Every morning, Deese and my mom went through this routine. It was like listening to the March Hare and the Mad Hatter recreate their famous tea party with the radio as the dormouse: the three voices, talking, screaming and mumbling at once plus the crushed dandelion and Dial Soap smell of detangler.

As chaotic as it was, both my mom and Deese were strangely content with this familiar situation. If I ever went into the bathroom for anything in the morning, both my mom and Deese would look up as if they’d been interrupted from an interesting conversation. Even the aluminum voice of the radio announcer seemed to pause long enough for me to get my toothbrush. Back out in the hallway, I’d close the bathroom door on the noise.

“Jyaakson’s own AM 970,” the radio would say, as if resuming an interrupted conversation. “EEEGGHH!” Deese would respond.

IMG_0568

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: April 17, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home