To the Strangers Who Stare and Comment: Get Bent.

I am the parent of a young adult with Autism.  I’m patient. She’s helped me build that patience. But if you are a parent of a young child with Autism and you leave me a comment giving me advice that basically would reinvent my wheel, so help me God, I will reply and make you cry.

I have been dealing with the explosive outbursts, Autistic meltdowns, sensory overload, overstimulation on low pressure days, tactile issues, noise issues, overpowering scents, obnoxious gestures and flight or fight reactions for well over 20 years. I got this. I’m not perfect. But I get HER. And as my friend, Cindy, says all the time, “When you know one person with Autism, you know ONE person with Autism.” Cindy would know. She’s been a teacher for about 13 years, 8 of those with Special Education.  She’s so right. If you intellectually know that every person WITHOUT Autism is a unique individual, then WHY can’t you get that about people WITH Autism?!

Do I seem shout-y and intolerant? I am. I am tired of the looks and the stares and the rude remarks and the presumptuous (albeit well-intended), unhelpful advice from people with ZERO experience with MY kid.

I am one of those parents who, until today, thought that Autism Speaks and other Autism awareness organizations do little to help those of us in the trenches of this nonverbal disability each day. I do not have a puzzle piece bumper sticker or a blue light bulb for the once a year “Blue Out” that some of my other friends put on their porch light. I didn’t “GET IT” until this morning.

While these organizations are working on research to help us understand causes and work on better interventions for Autism, they aren’t really a helpful “go to” resource for parents of older people with Autism who are still hoeing that row for those that follow us.  I’m not at all suggesting that my 21 year old daughter is a pioneer for the AU crowd around here. But I’m telling you that the reactions that she has are less accepted of her than they are for someone with similar disabilities who is 5 years old. And most of us with older kids/young adults are figuring it out as we go along…JUST LIKE ALL OF YOU WITH THE ALLEGEDLY NORMAL KIDS.

Here is the thing, “Normal Parent:”  YOUR kid will one day actually listen to your advice. He will get to do all the “normal” developmental stuff and “normal” school and break the “normal” rules, maybe even getting suspended once in high school for the “normal” prank or fight in the gym.  He’ll graduate from the “normal” or even AP classes and go to a “normal” university or college or trade school.  If I’m lucky, MY kid might work at Target bagging groceries and won’t get put in handcuffs by the cops when she’s fighting to run away from them after they’re called because she is screaming that the music is too loud.

But you know what?  “Normal is just a setting on the dryer!” (That’s another of Cindy’s catch phrases that she uses on me almost weekly, as she talks me off another emotional ledge.)  And the need for organizations like Autism Speaks, is to help the “normal” people, like you;  To assist you in understanding that not everyone is physically ABLE to understand your social cues and common courtesies that, when you think about it logically, really make very little sense at all.  Since when does “Excuse me,” translate to the rest of the world as “Step aside quickly. I want to push past you?” It is actually just a catch-all phrase that is  “said politely in various contexts, for example when attempting to get someone’s attention, asking someone to move so that one may pass, or interrupting or disagreeing with a speaker; or said when asking someone to repeat what they have just said.”  (**according to Bing’s definition.)

So when we are paying for our cup of hot chocolate at the 7-11 and take that entire extra 2.6 seconds to place 25 cents change inside a purse and zip it closed before attempting to leave the store, the words, “Excuse me,” have little meaning to my Autistic daughter.  The old hag who shoved past her while saying them meant, “I’m an impatient old bat in dire need of lottery tickets and another pack of cigarettes. Now move your ass!”

So, now that she has been pushed and hurried, she is holding her hot chocolate in one hand and my hand with the other.  As we attempt to exit the store, a young man grabbed the door handle and swung it open widely.  But instead of waiting for us to step through it, he pushed into me as he tried to squeeze past, causing me to bump into my daughter, which caused her to spill hot chocolate onto her hand. THEN he had the nerve to be upset when she screamed from the burn on her hand and turned around and shouted, “YOU FUCK!” at him. He started to argue but I said, “She has Autism….she doesn’t mean,” and then I stopped myself. You know what, old hag at the counter and boy who can’t wait for 1 second to enter a store before the doorway is cleared?  She’s right. You ARE fucks.

Autism awareness organizations are around because YOU “normal” people are too ignorant to recognize disabilities that are not glaring in your faces.  How many “normal” people walk around 7-11 wearing gun range headphones to cut down the noise around them?! OBVIOUSLY, there’s an issue there and this person doesn’t fall into your definition of “normal.”  Do you ordinarily push past the guy with the white cane because he’s taking an extra second to get through the door he can’t see?  What about the people who are speaking in sign language to one another?  Do you get pissy and shove past them when they don’t hear your lame “excuse me” at the check out lane?

Patience is something that everyone could use.  Do I sound impatient?  Well, I am. But this is due to YEARS of having complete strangers walk up and “shush” my kid who is screaming because the lights are too bright and some assistant manager decided to crank up the music playing on the PA system at the grocery store.  I will maintain my usual demeanor, most days, in public but I will no longer apologize to people for my daughter’s outbursts when 9 times out of 10 they contribute to them.  Just because she cannot verbalize what is bothering her does not mean that she is out of line for feeling bothered.  Attempting to understand why someone is upset is a sign of maturity.

I’m not expecting the world to bend over backwards and allow the AU crowd to do whatever they want whenever they want.  All I’m asking is that you take a second before reacting to their Tourette’s-like responses and decide whether that person is in crisis. Sometimes it’s truly just a disability.

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Alternators, Emissions, and Rainstorms-OHMY!

carsINrain

This is the view from my front porch today…or it WOULD BE if the Mazda weren’t at the mechanic’s garage right now.  We are currently a one-car family circus. This means that I am adding driving my husband to and from work to my usual chauffeur duties.  That’s not so bad, really.  I get to spend a little alone time with him on the way to work and he’ll hold my hand and sort of grunt in agreement as I chatter all the way.  He’s not a morning person.

The Mazda’s alternator is in need of repair. The van can’t seem to pass inspection due to an emissions issue and, as our regular type of luck runs, we’re still one year short of the emissions waiver. DAMMITMAN!  So, we’re working with what runs for now until the one that doesn’t is repaired and then we’ll switch vehicles for a whole new course of driving around in one vehicle while the other is repaired.

I am all about buying used cars and paying cash so that we don’t end up with car payments.  Some would say that considering the automotive repair issues we are facing now, that I should rethink my philosophy of used cars.  To them I say, “Au contraire, mon frère!”  We bought that Chevy van 3 years ago for $2000.  We’ve put about 30k miles on it and maybe $1000 under the hood.  Truthfully, that’s not bad for a 19 year old vehicle.  The Mazda was a gift from my brother, who heard that my little Metro’s transmission and clutch had bit the proverbial dust.  He drove it up here from Austin, signed the title over to me, took a 3-hour nap on my couch and then had me drop him off at the bus depot so he could make it home to work that night. What an awesome guy!  I’ve driven that thing at least 5k miles since February and this is the first time it’s needed to be repaired.

That’s the thing about vehicles, you know?  They eventually need to be repaired.  And many people would be more secure in driving a new car that is still under warranty, etc. But for us, justifying that car note also comes with justifying full coverage insurance which, with 2 teenage drivers, we just cannot afford.  So we’ll keep our secondhand cars and just ride the automotive repair waves this month.  It is what it is.  At least our second vehicle is not a bicycle.

 

Today Should be an International Holiday

So, the solar eclipse of 2017 here in North Texas sort of resembled a greenish-brown pre-tornado overcast sky.  I was not impressed. Of course, I would have been had I lived in Oregon.  But you know.  I don’t.  I live near Six Flags and Globe Life Park where the Texas Rangers play…oh, and that stupid-looking stadium that looks like the Dallas Cowboy’s Gargantuan White Nipple that can be seen on the horizon from 12-miles away.

The coolest thing about today has NOTHING to do with making solar glasses out of cereal boxes.  MY HIGH SCHOOLERS WENT BACK TO SCHOOL TODAY!!!  I’m enjoying the quiet of my 3 college-age kids and my husband.  I caught up on laundry, made my bed, downloaded some apps onto my computer and took care of some health care stuff online for several of us.  This is HUGE, y’all.  I was only interrupted once to help my husband trim his beard…and then he decided to just shave it all off so I was dismissed back to my solitude of peace, with no having to break up fights about whose turn it is to play on the laptop. WOOOOHOOOOO!

The first day of school should literally be an International Holiday.  And all mom’s who show up at any diner or coffee shop or convenience store with a stupid grin and looking slightly frazzled from getting those students off to school on that first day, should receive a big cup of coffee, tea, or whatever they want for free.

I’m going to live it up for the next hour before they lumber off the bus and raise the decibel levels up in here.  It’s party time.

July vs. November

Each November I pledge to myself that I am going to dedicate time to writing every single day with a goal of 50,000 words by the end of the month.  (That’s roughly 1,667 words per day.)  I always sprint out of the gate at the beginning and then by day five or so, I peter out and start skipping a day or two or nine and then write my fingers off for several days in a row, only to lose track of time and realize the month ended last week and I only have 10% written.

So this year, NaNoWriMo.com offered a Camp NaNoWriMo to kick off their fundraising event, by having a Summer version throughout July.  I decided that would be fabulous to participate in because after four years of trying, November is clearly NOT my month for writing.  So I started a “cabin” of my own, only none of my writer friends joined so the last week of June, I opened it up to anyone.  My cabin mates were mostly quiet. Two seemed to interact occasionally with me.  And we were all off and writing.

Two of my kids had to have their wisdom teeth extracted under full anesthesia within a week of each other and the dueling pain meds schedule and accommodation of soft foods combined with palatable textures for the one with Autism became my full-time job.  And before I knew it, it was August and I only had 8,376 words completed.

July is not my month either, apparently.

 

Texas: The European Tour

Did you know that Texas has a plethora of cities named after European cities?  I have known about Paris, Texas since I was a young girl.  I’ve toured most of Europe since we lived in Germany most of my childhood.  We spent many a holiday visiting the UK, the Netherlands, France, Belgium, Austria, Switzerland, Luxembourg, Italy, and more.  As a young adult, I traveled to Greece.

Now that we’re living in Texas, a lot has changed.  We’ve aged and don’t really feel the urge to travel great distances like we once did.  But on a whim, I took the kids on a road trip to Paris, Texas during Spring break a few years ago.  It was fun.  They have an Eiffel Tower there….but with a gigantic cowboy hat on the top of it.  Next to that, there is a veterans memorial dedicated to all of the veterans from that area as far back as the mid-1800’s.

After that trip, I decided that we’re going to check out every European city within our great state of Texas.  The next place we visited was Dublin, Texas.  It’s hands down our favorite so far.  We got to tour the Ben Hogan Museum there.  It was great.  Ben Hogan was such an amazing contributor to the game of golf.  He deserves his own little museum.  We also toured the Dr. Pepper Museum while we were there.  That place is so cool.  They’ve got DP stuff that goes back over 100 years.  We also had some sandwiches at the little sandwich shop that runs the DP museum and purchased a case of sodas bottled by the Dublin soda factory that still runs today.  I’d like to go back there one day when the antique shops are open.

We had a very sweaty trip to Athens, Texas.  Unfortunately for us, we got a late start on a Sunday, and by the time we arrived almost the whole town was closed.  We did go on a self-guided tour of the Arboretum there and it was extremely pleasant, albeit hotter than a $12 stereo.  The best part was a huge gazebo with a massive fan in the ceiling (it wasn’t on) and a stage.  No one was around, so I stood on that stage and sang my fool head off.  The acoustics were awesome.

This past Spring break, we attempted to see the sites of Rhome.  (No, that’s  not a typo.  It’s just a Texan spelling of Rome, I guess.)  The tiny little veterans memorial there was nice.  But that’s pretty much all it had to offer.  We got a little spooked by the muscle car full of rednecks that kept driving up and down the road while we were at the memorial.  The occupants kept staring at us like we were Martians.  Probably they’d never seen such good-looking people before.  Of course, it may have been the hijabs the girls and I were wearing.  Anyway, we decided 15 minutes was long enough and piled back in the van and went home.

Today, we decided to try a city whose twin used to be behind the Iron Curtain:  WARSAW.  Warsaw’s history is pretty sparse.  It was established back in 1847 and had a post office until 1858.  I think the largest population it had was 65 back in the 1990s, until recently when there was a huge population growth and now the town numbers 300.  They have a community center now.  And. Nothing. Else.  The trip was a 114-mile U-turn in someone’s driveway.  It’s a couple-hundred horse town….but no stop lights.  We didn’t even get out of the car.  We just drove back home and made ice cream sundaes and watched the rain fall for a while.  But that’s okay.  It was one more town checked off our list and family time of sandwiches in the car, one stop at a gas station to pee, and another story of “family togetherness torture” for the kids to complain about to their therapists when they’re older.

 

 

Anticipation

I dropped her off two weeks ago yesterday.  She left the next morning with her aunt and uncle and cousins.  They were heading west to meet my parents at the halfway point between their house and ours.  That’s not a quick road trip when you live in Texas.  They all had lunch together and stretched their legs and made their goodbyes.  She and one of her cousins climbed into the backseat of their grandparents’ car and continued their journey west.  My sister and her family turned around for the five hour drive back home.

Two weeks without a teenager in the house sounds like bliss during the Summer when you have four others living with you, too.  It’s not.  I am happy that she got to bond with her grandparents.  I am grateful that they took them to see such awesome and amazing natural sites of New Mexico and Arizona.  I am elated that my niece and daughter have had time together, away from their siblings and parents, to build that strong friendship and trust that cousins should have.  But the hole in my heart while she has been away has been difficult to deal with.

I love all of my nearly grown and grown children.  Each one has their own section in my heart.  I enjoyed spending time with my boys this Summer.  I learned that a lot of our conversations are interrupted by my daughters.  With only one daughter, the one who is usually blamed for these interruptions, I realized that it’s not only she who breaks into these moments with the boys.  I need to work on that.

I realized that my two girls, who fight daily because they share a bedroom, love each other to pieces and actually miss one another.  Randa slept in Samiya’s bed the first five days she was gone, just to feel close to her.  She had nightmares the last few days.  She kept getting out of bed, panicked, shouting, “Get in the car, Mommy!  It’s Samiya, trapped in a cave.  It’s save Samiya. Bring her home NOW!”  (She had seen the photos of Samiya and her cousin in Carlsbad Caverns from the second leg of their trip.)  Anxiety and Autism has a way of altering perspectives sometimes.  It took a lot of consoling and coaxing to convince her that Samiya was safe and back at Granddad’s house and that she would be home in just a few days.

Her brothers have missed her, too, although mostly as it relates to the frequency of their turns to wash dishes.  Ismail mentioned to me that he had been texting her throughout the two weeks.  Aiman had been talking to people they regularly game with online and talked to me excitedly about how Samiya had been promoted to a higher level on their team.  Mohamed talked with her, too, a few times by phone while she was gone.

But the person who has missed her most is her father.  He kept asking during the whole two weeks, “It’s long enough, right?” and when I told him that my sister planned to stay the night out there and come back Sunday, I could see his face fall just a little.  Then he said, “We should celebrate her coming back.  I’ll bring home chickens and you grill them on Sunday.  It will be a welcome home party.”  Daddy’s little girl personified.

Today, Randa will be pacing back and forth to the front door to check for her aunt and uncle’s car.  They drove out through the desert again to pick the girls up from Dad’s house.  And I will be washing and cooking and prepping for her return, trying to keep busy so I don’t jump out of my skin with excitement.  I missed my girl.

 

Stress in My Pressure Cooker Head

I was planning on writing today about how my “to-do lists” have become so long and intense that my body has started to fall apart. But just looking at that title has given me the start of an anxiety attack and my chest hurts now and my joints are throbbing and I just realized that I’m already late to go pick up one of the kids from Summer school.

So, perhaps I’ll write about this later under some soothing, aromatherapy inspired title post so that I won’t freak out about how even AFTER school lets out I can’t catch a freaking break.

the end.

I Did It Again!

Everyone has been guilty of it. At least, I hope I’m not alone in this. But I have this tendency to put important things in a “really safe place” and then when it comes time that I really need them, said “really safe place” has completely left my mind. Last time it was a social security card. Only took 5 days, but I found it. The application for health coverage took a little longer to find. Well, a lot longer. Like…6  months longer. But in my defense, someone rearranged all the paperwork in my stacked filing system. For crying out loud, would you people just STOP touching my desk!? But this one is a doozy.

I placed the tassels for Randa and Ismail’s graduation caps in a drawer so that no one would lose them. And I don’t remember which drawer. I’ve searched them all. And poof. They’re gone. And while I have until Sunday to find them, I really don’t. Because Randa has an awards ceremony for the seniors in the Special Education department and she is supposed to wear her cap and gown tomorrow. *sigh*

One of these days I’m going to find a “very special place” that is just a blatant out in the open place with a lock on it to keep nosy people and meddling hands away. Of course, you know what that means, right? I’ll just lose the damn key.

Ramadan 1438 (2017)

Well, in sticking with my usual Ramadan traditions, breakfast was LATE on the first night this year, too. I had big plans, people. BIG plans. We had the dates soaking in milk for about 13 hours. We had freshly made mango juice. We had hummous and baba ghanouj and I even remembered to have my husband bring bread home with him…because I always forget it. We had the coffee pot set up and ready to brew. I had found a recipe for making spiral-cut parmesan baked potatoes and had them ready to go. I had pulled the ribeyes out of the freezer before noon to thaw and since it was 40 billion degrees outside, I decided we’d grill them in the oven instead of any of that charcoal grill nonsense. And I made Brussels sprouts. I should have gone with the charcoal grill.

The stupid meat would not freaking cook. They’re steaks. I’ve made them at least 4000 times in my life time. WHY? What gives? The physics in my oven just decided to go on strike? AUGH! I don’t know what was going on there….but it was terrible. We had all the sides and juices and salads. But no meat until 9:00 when they finally finished cooking. And they were terrible. I was so sad that, of all the traditions, being late with dinner on the first night of Ramadan was the one that I managed to keep. *sigh* Oh, well.

Today I took the meat out of the freezer at 10 a.m. I’m going to start cooking at 3 p.m. And all I’ll have left 40 minutes or so before the sundown is to make a pot of rice and to turn the coffeepot on. Now if I could just remember this lesson on the first night of Ramadan 1439, I’ll be in good shape.

Ramadan Mubarak.

رمضان مبارك

 

Gearing Up for Starry Night Prom 2017

2016-05-23 16.58.40

See these bright smiles and happy faces in this photograph? They belong to some of the participants in the Starry Night Prom 2016. Starry Night Prom is a registered Non-Profit 501 (C) (3) organization that annually holds an all expense paid prom for Arlington ISD High School students with significant disabilities. Starry Night Prom is heading into its tenth year of hosting proms for these amazing kids and we want Starry Night Prom 2017 to be better than ever.

Throwing a prom at no cost for the students and their required chaperone requires donations, both money and in-kind. So the Starry Night Prom Vice-President of Donations has decided to start early this year. And our first fundraising event is already set up! With the help of the amazing, tasteful, and trendy: Charming Charlie (located in the Arlington Highlands.)

Charming Charlie is already having an awesome sale this entire Labor Day weekend. Why not do your shopping the first night of their sale to take advantage of their discount prices, fabulous selection, AND help a worthy cause? Think of the great Christmas gifts you can score ahead of the crowds! And don’t you think it’s time you got a new purse for yourself? Charming Charlie has bling, accessories, clothes, shoes, handbags, scarves and more.

How does your shopping help Starry Night Prom? It’s easy. If you show up this Friday, September 2, 2016 between 5:30 p.m. and 9:00 p.m. and shop, then you mention, “I want to support Starry Night Prom,” to the associate at check out. The associate will key in our special Starry Night Prom Chic Charity Event code into the register and then Charming Charlie will donate 10% of your total purchase price to Starry Night Prom. That’s it.

So, when and where and how is this again?

WHEN:          Friday, September 2, 2016
TIME:             From 5:30 p.m. until 9:00 p.m.
WHERE:        Charming Charlie located at 3901 Arlington Highlands Blvd,

                         Suite 101

                        Arlington, TX 76018

HOW:            Just go to Charming Charlie at the address above. Buy from their entire selection of amazing products and mention STARRY NIGHT PROM to the associate at check out. PLEASE be sure to mention STARRY NIGHT PROM at the beginning of your check out process to ensure that they code the transaction properly so that STARRY NIGHT PROM will receive a donation in the amount of 10% of your total sale.

We at Starry Night Prom thank you in advance for coming out to support our worthy cause. Helping to give an Arlington ISD high school student with significant disabilities the opportunity to enjoy the Prom experience that they might not have been able to have is definitely a reason to smile. Don’t believe it? The proof is in those smiles in the photo above.