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A week of Autism Speaks donations: Happy birthday, Joe Joe

13 Aug

You may have noticed something missing this month, something that you’ve seen for the past two years at Snap, Crackle, Pop: There’s no Joey’s Auction.

Over the past two Augusts, you glorious people have helped me raise $1071.50 for Elim Christian Academy, where my brother Joey went to high school, through Joey’s Auction and Joey’s Auction 2011.

This year, I decided to take the year off, in part because I want to come back with a bang next year.

I always chose August as the month of auctions because August is Joey’s birth month. On Thursday, my little brother will turn 23 years old. And a lot has happened since that first auction two years ago:

  • Joey graduated high school.
  • Joey entered, and got kicked out of, a day program. (He’s a total doll baby, but let’s just say he has it in him to be a turd.)
  • Joey started eating more than hot dogs (check out the third to last graph in that post). His menu currently includes White Castle burgers (if you forget to ask for them without onions, he will scrape them off, possibly on his own lap), sausage (the last time I was home, we had pizza. He stared at a piece on the plate in front of him for 10 minutes before snatching a piece of sausage off like a ninja), cucumbers (he’ll eat an entire one, cut up and in oil and seasonings), pickles (he used to only drink the juice) and more. He has also eaten an entire bullion cube (ew) and taken a bite of marinated, raw steak. (Well, tried to take a bite. Mom caught him as he did and got to him before he could actually swallow it.) When we sing him happy birthday this year, I’m wondering if he’ll take his first bit of cake in more than 20 years (unless he’s already had cake and Mom and Dad just haven’t mentioned that yet).
  • I got engaged. OK, that doesn’t affect him directly, but Mom has been dreading this time of my life since I graduated high school. What to do with him for that entire day? What if he acts up? What if he wanders around the reception and steals pop from everyone in Jeff’s family? (OK, I’m sort of counting on that last one happening.) But my parents’ quest to find an aide for Joey over the past, oh, two years has not proven fruitful. The idea is that we’d get someone to be at the wedding to spend the entire time with Joey so my mom and dad can, oh, I don’t know, actually enjoy their daughter’s wedding. So he can have someone to take him home if necessary. So he can have someone to go with him to the rest room. So my folks can have an extra set of eyes glued to him at the party with 125-ish people. I plan to ask every aunt, uncle and cousin I have to help my folks and see to it that they are able to enjoy themselves, but really, if we could have one person who’s trained to deal with him, that’d be swell.

Any who, despite not having an auction this year, I can’t let Joey’s birthday go uncelebrated. So this year, I will donate 10 percent of every Jac & Elsie sale to Autism Speaks, starting today and going through Sunday, Aug. 19. If you’ve had your eye on anything and have been waiting to take the purchase plunge, now’s the time to do it.

If you want to help out but would rather donate directly to Autism Speaks, you can do so here. Say you’re giving for Joey. (And let me know so I can add it to the total. I’m happy to keep it anonymous, if you like.)

Joey, and my family, thank you (despite the fact that he’s giving you the stink eye).

For Autism Speaks, we raised …

2 May

… $136.02!!!

I send out an enormous thank you to everyone who purchased from Jac & Elsie in April. For Autism Awareness Month, I’m so thrilled at the amount of money you helped me raise for Autism Speaks.

I blow you kisses and pass out gold-star stickers.

A road trip home

9 Apr

I spent a long weekend at my folks’ with the beau for Easter. (Why does it always seem like the long weekends seem the shortest? Wildly unfair.) This weekend seemed tailor made for participating in this week’s Northwest Mommy Listicle. In her words:

This Monday, seeing how all of us would have driven somewhere to spend Easter weekend with friends and family, I thought we do a list about ten things ROAD.

Done and done, Stasha!

Want to link up? Just click on the button!

Top 10 Things That Happened This Weekend

1) I somehow talked the beau into driving both TO my parents’ AND FROM. I think he felt pity on my gimpy neck (I woke up on Thursday with a crick that made it painful to check my blindspot). Not sure why he offered Sunday evening, but I appreciated it!

2) The gas prices didn’t behave as they normally do. There’s a little town that’s just about halfway between me and my folks’, and I always gas up there because it’s by far the cheapest gas in a 75-mile radius from home. Not this time, bastard Easter making bastard gas station owners raise the bastard prices.

3) Birthday cannoli! I barely touched the birthday cake Mom made, which made me feel terrible, but come on. You put cannoli in front of me, I’m not gonna wanna eat anything else. (It has the highest ratio of ease to taste of any dessert I know: You want one part powdered sugar to three parts ricotta cheese. Add a teaspoon of vanilla and a dash of cinnamon, and beat until smooth. Insert amazing goop in cannoli shell right before you eat it so the shell doesn’t get soggy.  Garnish with chopped pistachios or mini chocolate chips. C’est tout!)

4) Mom had told me Joey had started to eat Real Food, but I hadn’t really witnessed it until now. Dad, the beau and I took him to White Castle on Friday, and I watched him pick up a burger, dust off the onions (onto his lap) and pickle and eat half of it. My jaw dropped, closing sometime around Saturday afternoon. I also watched him pick the Italian sausage from the homemade pizza we had for dinner Friday night and eat it. You have to understand, this kid hasn’t eaten anything but hot dogs, banana milkshakes and crunchy things (crackers, cereal) since he was 3. He’s now 22.

5) “Revenge of the Titans” in 3-D. Good times.

6) Birthday equaled some really amazing goodies, including this little black Rock & Republic dress. I can’t believe my mother bought me something so sexy, but I must admit: I look forward to having an appropriate opportunity to wear it.

7) I got to talk to Nani. Like, my Nani. Alzheimer’s is a bitch, and it can give a person about five different personalities. One of those is the actual personality, which in Nani’s case, comes out less and less. I got to talk to her for a few minutes Sunday afternoon. She told me she thinks about me all the time, and that when you get to a certain age, your memories are all you have. And she said she doesn’t know how Papa still goes to work every day (he’s 90 and owns a cheese factory) and that he takes care of her. As she said this, he slid her pills across to her. And then they held hands and made “I adore you” eyes at each other.

8) I dyed Easter eggs with Joey. It’s one of the very few things I can get him to do with me, and I’m not sure which of us looks forward to it more every year.

9) I got to hear a whole butt-ton of references to the beau joining the family (no, we are not engaged). Nani “whispered” to Papa, asking if I had a ring. (Mom and I heard it from across the room and about lost our shit laughing.) One uncle told the beau how he declared Jeff my father’s son-in-law to-be the first time he met him a year and a half ago. I think my aunt tried to talk honeymoon plans with the beau. And another aunt saw a portrait Jeff was working on and announced, “I didn’t know we had someone so talented in the family!” Again, let me reiterate: NOT engaged. I love my big fat Italian/Assyrian family.

10) Game of Thrones. OK, we watched it after we got back home, but it was the best way ever to end a happy and hectic weekend.

April is Autism Awareness Month

2 Apr

Last week, I received a press release from our local Easter Seals. The Centers for Disease Control and Prevention just changed the statistic about how often autism occurs.

It is up to 1 in 88 children and 1 in 55 8-year-old boys.

That means a child is more likely to be autistic than develop cancer (1 to 2 in every 10,000). A child is more likely to be autistic than be born with Down Syndrome (1 in every 800 to 1,000 babies), or Fetal Alcohol Syndrome (1/2 to 1 1/2 per 1000 live births), or a cleft palate (1 in 1,000).

I do not share these stats to say autism is worse than any of these things happening to a child. I share them to put some perspective on how friggin’ huge “1 in 88” is.

What has caused this insane spike in occurrences? Is it better diagnosis? Is it misdiagnosis? A friend shared with me a story about his son acting “off,” so they took him to get tested for autism. The doc told him, “No, he’s not autistic, he’s just weird.” Is this insane increase in occurrences making parents hyper vigilante and doctors extra likely to slap that label on a kid who’s perhaps just a little quirky?

Or is autism truly an epidemic? It’s said to be caused by environmental and hereditary reasons, so if more people have autism or an autism gene, then more people will birth autistic children, right?

Whatever the facts of the scary stat, the truth remains that research into causes and treatments are paramount. As I’ve done every April since opening shop, I will donate 10 percent of all Jac & Elsie sales to Autism Speaks this month (except those pieces that are already designated for a charity). If you want to help out but don’t feel like shopping, you can donate straight to Autism Speaks, the country’s largest autism science and advocacy group, here.

I’m also debuting some puzzle piece friendship sets this April, and throughout the month, I will donate 20 percent of each of those to Autism Speaks. They are simpler than my other designs — no hot dogs or color clusters, just a pewter puzzle, a pewter initial charm and a single colored bead.

And because I can’t write about autism without sharing at least one Joey anecdote: Last week, Mom told me he went into the basement and brought up some Christmas wrapping paper.

This by far beats last year’s Christmas countdown that started in September.

An autism donation & an autism memoir by an older brother

22 Feb

I received a request from a group a few weeks ago seeing if I would be interested in donating a Jac & Elsie autism bracelet to a fundraising night at the Institute for Educational Achievement.

My contact for the group sent me the IEA’s brochure, and my immediate reaction — “Of course!” — was solidified. The following graph is what sold me most:

IEA’s mission is to enable young individuals with autism to live in family environments and avoid institutionalization. We are dedicated to helping students acquire new skills that facilitate full participation in community life, and preparing them for enrollment in public schools and post-educational experiences.

My brother lives at home. It’s my parents’ mission to keep him at home as long as possible. Group homes can be helpful — and will eventually be necessary, as at 55, my folks will be 56 this year, not 54. (Ain’t it a pain how that works?) But keeping folks with autism and other developmental disabilities at home not only saves the state bundles and bundles of money, but it assures people are kept with their families. Sure, teachers and aides can enjoy working with those with disabilites — and often do enjoy it, cause let’s face it: that is not a job you get in for the money — but they are not going to love Joey like my parents do.

So a group that aims to keep individuals with t heir families? Yes, please, let me help you raise money, because you’re awesome.

Over the weekend, I finished a book I was in the midst of when I received the above request. “Boy Alone” is a memoir by Karl Taro Greenfeld about his brother, Noah. Noah is two years younger than Karl, and he has autism. I love reading autism memoirs, and this was the first I read by a sibling. Noah was diagnosed in the 1970s, when autism was still virtually unheard of. His family tried to care for him as much as they could, but Noah was violent. He pinched and hit. He spit. He shat in the middle of the floor. He threw tantrums. He was enough trouble that his parents, who wanted to continue to care for him, could no longer do it.

Unfortunately, the very best place they could find for Noah was one that would withhold food to punish him, and it rewarded him with food. He lost weight quickly and changed the way he ate, gulping food down when it was given because he knew it might not come again in a while.

The institution also would invoke corporeal punishment if Noah misbehaved. His parents would find bruises on his back and arms despite their insistence that Noah not be hit. They eventually pulled him out of the institution and found caregivers for him. Many weren’t much better, abusing him physically and sexually.

Needless to say, it was a hard book to read.

It’s not the 1970s anymore, but keeping people with autism out of institutions is a goal I can fully get behind.

I donated one autism bracelet, as the IEA requested, and an autism necklace:

The one I made has a clear bead, a light blue bead and a cobalt blue bead.

This is the exact necklace I donated, with a genuine pearl.

These items, along with other donations, will be auctioned off in late March for the group.

If you would like to donate to the IEA, here’s how. I donate a portion of Jac & Elsie autism items to Autism Speaks, but if you purchase  one and would like the donation to go to the IEA, just leave a note. I’m happy to help this group.

There are some “Boy Alone”-related reads, if you’re interested: The New York Times, Huffington Post, Time. The Time article was written by Karl Taro Greenfield, Noah’s older brother. There may be some more “Boy Alone” thoughts coming from me. It was a hard book to read.

Things I’d like to see happen before I die

23 Jan

Totally loving on Ally’s idea for Northwest Mommy’s Listicle this Monday: 10 things I’d like to see happen before I die.

I would like to see:

1) Gays have the right to marry. Not civilly union each other, but wed. With all the same rights as straight couples.

2) My parents go on a vacation by themselves. Australia would be great, as they’ve wanted to go forever. When I was little, they told me they’d go for their 25th anniversary. But Joey threw a bit of a wrench in those plans. In my life, Mom and Dad have been on two (TWO) vacations together. The last time they went, I was in  junior high or high school. And this year, they celebrate their 34th anniversary. So they’re a bit late to celebrate the silver anniversary down under.

3) A cure for autism.

4) A Jac & Elsie item on the front page of Etsy. (It’s the little things, man.)

5) A book on a bookshelf by moi. And not one of those self-published deals, either.

6) A graphic novel on a bookshelf by the beau. And, again, not one of those self-published deals, either.

7) Jac in Harry Potter World.

8) Jac in Italy.

9) Jac meeting Stephen King.

10) Jac in Andimeshk, Iran. It’s the town where my dad was born and grew up. In terms of “most unlikely to happen,” this one ties with No. 3. God, how sad — I’ll write and publish a book before I get to step foot in Iran. So true, though. (He has stories of dynamite fishing in the Persian Gulf. That is … he’d throw sticks of dynamite in the water, and he and his dad would gather the fish. Can you imagine throwing an explosive in Iranian waters????

What’s something you want to see happen before you die?

 

Check it out: A giveaway, a new mom & changing the definition of autism

20 Jan

Happy Friday, all! I hope your weekends are looking much less freezing and snowy than mine is.

I’ve got a few things you should definitely check out when you get a chance:

First, want to win your choice of Wordplay locket from Jac & Elsie? Hop on over to The Arizona Russums to enter the giveaway! If you win, you’ll get to pick from the lockets in the shop.

Second, definitely no Fill-in-the-Blank Friday this week … because our lovely link-up hostess just had a baby. Wander over to the little things we do, check out Lauren’s beautiful family portraits and wish her congrats.

Third, read this and see if you can make any more sense of it than I can. In short, an American Psychiatric Association panel is toying with switching up the definition of autism so it no longer includes a majority of those with Asperger’s Syndrome or PDD-NOS, the latter of which is Joey’s diagnosis. The article doesn’t get into what would happen to people with either of those diagnoses — would they become their own entity? get their own label? — but the short-term affect is that those receiving state aid for those diagnoses would no longer get that aid because they would no longer be considered “autistic.”

Me and Joey on Christmas eve with Judgmental Santa. (You can't tell from this angle, but seriously, he's looking down on you.)

Joey has been getting help from the state in the form of therapists and behavioral analysts for more than a year now, and they have been a literal life-saver for my parents. However, if the definition of autism changes, 85 percent of those with PDD-NOS would no longer quality as autistic and would therefore no longer qualify for those funds. Chances are, due to Joey’s severity — he doesn’t talk, which is the biggie — he’d still be covered. Probably. But what about all those other parents who finally have found help? Would they have to start over? Or would their cases be grandfathered in so the parents wouldn’t have to work from scratch to get their kid help?

The idea is that with the numbers exploding the way they have, something isn’t right. Today, 1 in 110 children in the U.S. are on the autism spectrum, which currently includes PDD-NOS, Asperger’s and traditional “autism.” (Aside from the fact that those with Asperger’s are much higher functioning … no, I don’t understand the differences.) That is a 600 percent increase since Joey was diagnosed nearly two decades ago. (source.)

Getting aid is a bitch no matter how you look at it, but throwing in another monkey wrench into an already difficult system isn’t going to fix anything; it’s only going to worry parents and siblings and loved ones. I have to wonder — does anyone on these boards know anyone with autism? Do they have any idea how much they freak people out when they throw out this stuff as possibilities?

There’s something to be said for keeping what you think under your hat until that idea becomes something concrete.