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

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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.

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When I Realized I’ll Be the Sole Care Provider for My Brothers Someday

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This weekend, I got the opportunity to speak at the Ohio Sibs Convention—an organization that supports both individuals with disabilities and their siblings. I came to an odd conclusion. I will without doubt, be the sole care provider for my brothers and possibly my sister one day. I had thought about it before. It would just be like old times, spending every moment with my best friends. But this time it really hit me.

I’m guessing it’s a similar feeling to that of a forced marriage, only with the opposite perks. A prince marries his princess, and they spend their lives in continued luxury, forcing themselves to build a relationship in order to maintain the esteemed family bloodline. They have everything they need, but do they truly love each other?

Then I look at things from my side. I automatically have more mouths to feed, I might be giving up future expeditions with my potential spouse, or what if I don’t even find a spouse because I’m seen as the intimidating packaged deal? After considering that, there is one thing I know I will always have: unconditional love from my biggest companions. We might lose some societal advantages, but we know how to survive together.

Both sides come across as selfish. If the prince or princess does not love the other, then they are not pitied. Why should they be? Everything is handed to them from birth. Even a luxurious wedding. Or me, expressing the hard truths of raising my adult siblings. From society’s standpoint, it’s wrong to consider my own future solely, and complain about a family obligation.

The prince and princess are born to fill very expensive, uncomfortable shoes. I was born to fill the middle class supportive shoes while aiding in the tying, strapping and zipping of the shoes of my siblings.

Which has more worth, luxury or love?

I am making a vow that I will be the future provider for my brothers. I will not do it because it’s the right thing to do. I will do it because I want to. I don’t need to taste wealth or fame to know that the relationship with my brothers is worth so much more. And I need my siblings as much as they need me.

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A longer version of this post originally appeared on Journey Through a Special World.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Promise I Made My Father Before He Died

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We sat next to each other on the sofa, holding hands.

“Whatever you do in life, Princess,” he said, “just do your best.”

I assured him I would.

I think we were both sure that this would be the last time we would be together, and every second of every minute mattered. We were lucky that we got the opportunity to say all we needed to say to each other. Others don’t get that chance.

I never forgot the promise I made. I was (and still am) determined to fulfill it.

That was the last time I saw my daddy alive.

My daddy. My hero. He lived courageously and with great dignity for the last 12 months of his life after being diagnosed with oesophageal cancer. He was only 54 years old.

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My daddy, taken away far too early. Taken before he ever got the opportunity to know me as an adult and to know his only granddaughter.

It just wasn’t fair. And it still isn’t.

As time went on, I endeavored to fulfill my promise. Sure, I made mistakes along the way — plenty of them. But that’s human nature, I guess.

I studied hard, graduated from university and became a professional.

I got married and (eventually – long story!) had a baby.

I wished he was here to see all of it. I wished he’d been at my graduation ceremony, to give me away at my wedding, to meet his only granddaughter and so much more. He would have been so proud — I have absolutely no doubt.

He most definitely would have been the proudest Grandpa and probably would have spoiled Hannah rotten. But I think that’s somewhere in the job description of being a grandparent.

I realize now, however, that while studying hard, striving to get a good job and so on, is all well and good, my biggest achievement was becoming a mummy.

Add to this the title of “Special Needs Mama,” and this has become my biggest challenge so far. But it’s one that’s been worth flipping our world upside down for, even with all the stress, the trauma, the sleepless nights and everything else. Because I have my girl — my wonderful, precious, quirky, scrumptious kid, who makes my heart sing just to look at her.

I make mistakes, but I’m just trying to do my best.  That’s all I can do.

I’ll always cherish the time I had with him and I hope that wherever he is, he knows that I’m still trying and that he’s proud of the person I’ve become.

You’re always in my heart, Daddy.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Think She’ll Benefit From Her Brother’s Down Syndrome Diagnosis

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Dear Violet,

When your Dad called me to tell me that your brother had Down syndrome, my world stopped for a minute. I dropped the phone and fell on the floor. The first thing that came out of my mouth was, “Oh God, this doesn’t feel real, this doesn’t feel real, this doesn’t feel real.”  The next thing was, “Oh no, poor Violet, poor Violet, poor Violet.” Of course my thoughts turned to you, sweet girl.

For 16 months, you were my world. I can honestly say that I cherished all of our days together. OK, I could have done without some of the teething ones! I really did try to soak in the little details of the day-to-day: the giggles, playing peek-a-boo and reading the same books over and over again. But when I learned about your brother’s diagnosis, I sadly exited the present and lived in your future.

Instead of focusing on your first words, I focused on your middle school years. What if someone made fun of you for having a brother who was different? What if I got too overwhelmed with his special needs and forgot about your needs? All I could think about was how this wasn’t fair to you. What I failed to think about in those first few weeks was how wonderful his diagnosis could be for you.

I didn’t know that 94% of children who had a younger brother or sister with Down syndrome felt pride for their sibling and that 88% of kids also said they felt their brother or sister with DS made them a better person. This is my hope for you, Violet.

When you see your brother, Anderson, working hard to accomplish something that comes so naturally to you, I pray you learn humility. When you are tempted to judge someone based on his or her appearance, I pray you think of your brother and how he will be judged. When you are tempted to complain about life’s little annoyances, I pray you instead feel grateful for your many blessings.

I hope you teach each other to cherish life, find the beauty in all the small things, to live with gratitude. I hope you teach each other to love.

I know you may grow up sooner than your peers, but I don’t think that’s a bad thing. Because of your brother, I hope you can bypass some of the shallowness that comes with youth. I hope because of your brother, you will live life fearlessly and maximize all of your talents. I hope you see your brother and realize there’s a big world with many needs outside of your school hallways.

So I’m not sorry your brother has Down syndrome. I don’t think it’s unfair anymore. In fact, I feel you’re at an advantage because of his diagnosis. You have the secret to life right in front of you. Being popular doesn’t matter. Having the coolest car in the high school parking lot (which you won’t have, by the way) doesn’t matter. Being pretty doesn’t matter. What matters most is this: to love people, all people.

Love, Mom

P.S.: Please know that your brother is so fortunate to have you as his sister. I know you will learn from him, but he will learn from you. You are kind like your dad and feisty like me. We know you will be not only one of his greatest teachers, but his protector and his friend. He’s so lucky.

This post originally appeared on News Anchor to Homemaker.

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RELATED: What’s One Thing You Wish People Knew About Down Syndrome?

 

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The Promposals Have Begun, and This One Will Be Hard to Beat

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James, a student with special needs at Glenelg High School in Howard County, Maryland, recently experienced a moment he won’t soon forget.

In the video below, James, followed by a camera, makes his way onto the school basketball court. There, students have gathered for a pep rally in his honor. As they chant and sing, James takes center stage and a young woman approaches him with a sign.

The young woman is a student named Maisy, Cosmopolitan reported. Her sign said “James prom?” and the crowd went wild.

Watch the video below for James’s enthusiastic answer: 

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When My Brother With Autism Approached Our Dad’s Casket

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Death is never easy, no matter how old you are. When November 23 of this year comes, it will be 12 years since my father passed away from lung cancer. He was the first one to die in my immediate family.

Making arrangements and dealing with the loss was difficult enough, but trying to explain to my nonverbal, autistic and developmentally delayed brother that my dad was no longer with us was even more difficult. My mother and I were unsure how much he understood about death. We still don’t know.

Some people who have loved ones with intellectual disabilities do not let them attend the memorial service or funeral. My mother and I felt that my brother needed to see my father one last time. We hoped that he would be able to process his death that way.

The day for my father’s memorial service came. We greeted people who knew my father. Some asked what happened and we had to repeat the story over and over again, shedding tears every time. The minister spoke and then it was time. It was time to say goodbye.

My mother, my brother and I approached the casket. We all gazed at my father. Then my brother tried to lift my father out of the casket. It was almost as if he thought he was sleeping and he was trying to wake him up.

My mother and I almost lost it. It was a really touching and sad moment.

To this day, I wonder how my brother is dealing with my father’s loss, but at the same time, I’m worried how he will handle when my mother passes.

All my mother and I can do is put enough supports in place that will soften that blow.

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