Joey’s Hot Dogs are here!

1 Apr

I know I’ve been cruel lately, talking about some project I’ve been working on since, like, November. Well, I’m finished! Would you like to see?

((Huge huge huge thanks to Dana, Stephanie, Lindsay and Bonty for being my editors on this bad boy. I owe you all. Mucho love, jy))

* * *

When I used to use a pencil and paper to write words, over and over again, it was to learn to spell them.

These, my friends, are Joey’s Hot Dogs. Hope it’s not too anticlimactic for you 🙂

Pseudonym. Pseudonym. Pseudonym.

When my brother writes words over and over again, it’s because he wants that particular object. A year or two ago, Mom told me on the phone that Joey had been writing my name over and over again.

Jaclyn. Jaclyn. Jaclyn.

She said it in passing. She didn’t know I started crying on the spot.

It is not often that I write about Joey, partly because Mom doesn’t like it when I do and partly because I never know what to say. Joey has made me into who I am more than any other factor in my life, and that’s not easily condensible.

My reason for writing this is because I can’t not, because I’ve wanted to for years and haven’t known how to start. It’s 100 percent selfish. I could say it’s to inform people about autism, and I suppose “informing” will be an effect. It is not, however, the cause. The cause is me.

Jaclyn. Jaclyn. Jaclyn.

I was 5 years old, laying on my belly, chin propped in my hands and watching Tom and Jerry, when my mom called me into the hallway. How would I like a new brother or sister? she asked. I’d like a new sister, I said. Can I go watch Tom and Jerry now?

When Joey came along, I remember wanting to hold him a lot. I remember wondering if anyone else realized that he was impossibly adorable, much cuter than the other sea-monkey babies I saw. I remember marveling over his head, an exact replica of a bowling ball.

I remember him babbling. He said “Bob” a lot, and we figured it was his imaginary friend. I remember him eating pizza. I remember him staring at ceiling fans the way a man will stare at a startlingly beautiful woman: unblinking, mouth slightly agape and for a second too long.

Then he called upon Bob less and less. He stopped eating pizza. The ceiling fans won more eye contact than Mom, Dad and I combined. I remember Mom and Dad yelling. Crying. A fist through a door. Doctors. More doctors. Good God, more and more doctors. I do not remember anyone telling me my brother had autism.

He is 20 years old now. He has never kissed a girl. He has never driven a car. He has never said a word.

But then, he’s never told a secret, either. In high school, I’d crawl in bed with him and complain about boys, friends, parents and other end-of-the-world problems. He still hasn’t told.

He’s about my height now, maybe a little taller. I can wear his shoes, and his sweatshirts. Dad used to joke that he could park the family’s Isuzu Rodeo in my nose. If this is true, Joey’s honker could double as an airplane hangar. He has funky teeth because he’s not very good at taking care of them. His eyes are my color, so brown they’re almost black. His close-cropped dark brown hair feels like a Brillo pad. I think he has a receding hairline. He’s very handsome. When Mom takes him grocery shopping, girls look at him.

He doesn’t like change, a trait common in people with autism. Dad guesses that’s why Joey wants me home all the time, why he calls for me by writing my name over and over. I lived at home for 18 years before moving away for college. I lived home during most of those summers. After graduation, I lived at home for a year. Joey’s world is right when I’m asleep in the room where he typically spends most of his days watching Cartoon Network and eating cereal and crackers. He does this in bed, so when I do visit, Mom and I change the sheets so I don’t have to roll around in crumbs all night.

I have considerably less interaction with my brother than other friends have with their siblings, though he has shaped more aspects of my life than I can possibly count. He’s responsible for much of my religious beliefs. He’s responsible for the family I envision for myself in two, five, 10 years. He’s to blame for the only thing I truly envy in life: my friends who are close to their brothers and sisters. I adore hanging out with these siblings. I can’t help but study their interactions, the silly bickering of brothers over beer at BW3, the reminiscing of sisters over who stole whose shoes in high school and gave the other a bloody nose. I am a voyer into these interactions. I want to crawl inside them and claim them as my own, a thief with loot much more valuable than an iPod or the contents of a bank vault.

I wish I could say I’d never change Joey for anything, but that’s a bold-faced lie. Of course I’d change him. I’d make life easier for him. I’d give him the ability to convey his thoughts; often, for children and people with autism, the biggest frustration is the inability to communicate. They simply lack the knowledge about how to interact with others. As such, I do what I can to start that communication, even if that’s by pissing him off: Joey has a stool at the island in my parents’ kitchen. It’s Joey’s seat. If someone else is sitting there when he walks into the kitchen, he will order that person to move.

I love being that person. I sit there on purpose just so he tells me to get out, arm stretched in front of him, fingers flapping, brow furrowed. Stealing his spot makes him pay attention to me.

April is Autism Awareness Month. What you should be aware of is that autism affects one in 110 children and one in 70 boys. Those numbers are jaw-dropping, though they do include milder diagnoses on the autism spectrum, like Asperger’s syndrome, which looks very, very different from Joey’s pervasive developmental disorder-not otherwise specified, or PDD-NOS, if you know the lingo. Doesn’t matter. It’s an ugly diagnosis that affects beautiful people.

I wish I could do more to help with the problem. I could never teach or work with people with autism; I’d go home and cry until I hyperventilated every day. I’m not that strong, but I can write, and I can give money to people much smarter than I. I make jewelry and sell it on Etsy. It’s a meager little side hobby, but it’s fun, and it keeps me out of trouble. Throughout April, I’m going to donate 25 percent of sales over at Jac & Elsie to Autism Speaks, the U.S.’s largest autism advocacy group geared toward research, treatment, prevention and the like. For custom sales, $2 will go to Autism Speaks.

Most exciting, however is the debut of Joey’s Hot Dogs, a necklace that will become a staple over at Jac & Elsie. In addition to the crackers and cereal that litter my bed, Joey eats hot dogs. Ball Park Franks, boiled, sliced down the middle length-wise, then cut into bite-sized pieces. Two of them for lunch, two for dinner. Joey’s Hot Dogs necklaces are 18 inches long and come with a pewter hot dog, plus a silver-toned puzzle piece — the symbol for autism — and a yellow, red or blue bead. I’m selling them for $11 each, and $5 of every sale will go to Autism Speaks, even when Autism Awareness Month is over and done with. Personalize your Joey’s Hot Dogs necklace with an initial charm for an extra $3.

I turn 27 on April 14. This is my birthday gift to myself.

This, and some framed artwork a la Joey. The kind that has my name on it, over and over and over.

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18 Responses to “Joey’s Hot Dogs are here!”

  1. Suburban Sweetheart April 1, 2010 at 12:55 am #

    Oh, Jaclyn. This post is beautiful. I already sent the link to my best friend, who works with children with autism at a school down in Tennessee. This post made me appreciate, even more than before, the work she does & the patience & love with which she’s able to do it.

    I admit that sometimes I’m afraid of having a child who has autism. How would I deal with it? It takes so much time, so much effort; how could I do that? But we do what we have to to deal with the lives we’re given, * this post is a poignant reminder. I love this story of how you have adapted – around, for, because of & with – your brother.

    Thanks for posting this. I’m happy to help you spread the word. ❤

  2. craftycritter April 1, 2010 at 5:48 pm #

    I followed this link from All Things Crafty. And I have to say I know exactly how you feel. My younger brother is also diagnosed PDD-NOS, although he’s high functioning. Which can be as frustrating, especially when he doesn’t think there’s anything wrong. And even though my brother is more than capable of communicating, I still don’t have that relationship you described being a voyer to. And, like you, I wish that I could.

  3. r'sbigsister April 2, 2010 at 11:22 am #

    Thank you for sharing about your brother. I couldn’t read the whole thing. My little brother (25 now) has Asperger’s, and since he wasn’t diagnosed until high school, we’re all still learning. What really touched me was when you wrote about communication. The only emotion my brother can really understand and communicate back is anger/frustration. He cognitively understands the range of emotions, but can’t express them. Like you, I would give anything to be able to release him from this thing that inhibits (some of) what makes people what we are. While I love my little brother to pieces, and see beauty where others see dysfunction, I still long for the day where, God willing, I’ll see him in heaven, and finally – finally, “meet” my little brother.

  4. Dawn Callahan April 7, 2010 at 11:27 pm #

    Oh Jaclyn…that was just beautiful. We’ve never met, but I was Joey’s teacher at Elim for a few years. This article is so incedible, showing Joey for the sweet soul he is, the way only a sister could. His new teacher makes sure to keep him and I in contact, and he has made projects for me on Thanksgivng and Christmas, each one so special to me. Your mom and I keep in contact as well (how I got this link). She’s always told me what a gifted writer you are, and I am so glad I can finally read something of yours. I had no idea about the jewelry and plan to be a customer on my next pay day! Thank you for this article, it made me cry, but because I was moved, not sad. You are truly gifted!

    • Snap, Crackle, Pop April 7, 2010 at 11:31 pm #

      Hi Dawn! Thank you so so much for your kind words and for caring so much for Joey ❤

  5. Frume Sarah April 4, 2011 at 1:39 am #

    As I watch my sleeping daughter, I wonder if she will be able to articulate her feelings towards her older brother in such a beautiful way. He has Aspgerger’s and it most definitely affects how she interacts as a little sister and, in turn, how she is as an older sister to our little guy.

    What a wonderful tribute…

  6. rachel / cr.e.at.e April 5, 2011 at 11:06 am #

    this is so touching, jaclyn. and i LOVE that you sit in his stool. i get it. 🙂 my son brett (9 years old) is autistic – but started talking [articulating] @ 3 1/2. we’ve been working ever since on his speech & language & getting into his head. 🙂 i have 2 other children – another son & a daughter. i do wonder what their relationship will look like as adults. i pray & hope they take care of each other. keep sitting in his stool. 🙂 i love that.

  7. Tera August 21, 2014 at 3:20 pm #

    An intriguing discussion is worth comment. I do believe
    that you need to write more about this subject matter,
    it may not be a taboo subject but usually people don’t speak about such issues.
    To the next! Best wishes!!

Trackbacks/Pingbacks

  1. A worthwhile cause « All things crafty - April 1, 2010

    […] Well, she’s finally put the story down in a touching post at her blog. […]

  2. A worthwhile cause « j.a.m. Creations - April 1, 2010

    […] Well, she’s finally put the story down in a touching post at her blog. […]

  3. A voice for the voiceless « Painting Faith - April 5, 2010

    […] Read the story of Jaclyn and her brother, Joey, on her blog. […]

  4. Wild Blueberry Ink :: Spilled Ink - April 6, 2010

    […] research – or snooping.  During this “research” I found her blog and came across this post.    I was amazed at how honest and open she was about her experience with an Autistic brother […]

  5. New Joey’s Hot Dogs color — green, like relish! « Snap, Crackle, Pop - May 17, 2010

    […] 17, 2010 at 8:01 pm (Autism, Etsy) Just listed — Joey’s Hot Dogs in green! The story’s still the same, the necklaces are still available with or without initial charms and the donation […]

  6. Faith, Love, and Joey – by guest blogger Jaclyn Youhana (Christian views on disability) « Gospel of Weakness - June 18, 2010

    […] A few weeks back, someone forwarded a blog entry by the sister of one of our students with autism (You can find the original entry by clicking here). I was struck by two things: the writer’s skill with prose, and the sincere wrestling she […]

  7. Attn: Crafters for a cause! « Snap, Crackle, Pop - July 7, 2010

    […] celebrate his birthday — much the way I celebrated Autism Awareness Month in April — I’m doing something a little special to raise some money for autism […]

  8. 2010 in review « Snap, Crackle, Pop - January 2, 2011

    […] Joey’s Hot Dogs are here! April 2010 12 comments 5 […]

  9. Joey’s Hot Dog bracelets & Autism Awareness Month « Snap, Crackle, Pop - March 30, 2011

    […] April, you know this.  You remember when I debuted Joey’s Hot Dog necklaces with my “This is what it was like growing up with Joey” story. When I announced that I was donating 25 percent of Jaclyn1423′s April sales to […]

  10. A week of Autism Speaks donations: Happy birthday, Joe Joe « - August 13, 2012

    […] started eating more than hot dogs (check out the third to last graph in that post). His menu currently includes White Castle burgers […]

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