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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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.

 

Summer of Wisdom…err, Teeth

Back in September or October, Randa’s dentist informed me that her wisdom teeth were starting to come in.  She gave us a referral to an oral surgeon and we called.  No joy.  He no longer accepted Randa’s dental insurance.  We tried another.  Same result.  We tried three more.  Finally, in February, we found an oral surgeon in north Dallas.  Or so we thought.  We drove up for the preliminary appointment; no easy feat from our house during peak morning rush hour.  The doctor seemed capable and friendly and gentle with Randa.  We went out front to schedule the surgery.  The receptionist said that it would take about a week to hear back from the insurance company and then she would call me.  She handed me prescriptions to have filled and gave me a folder with some antibiotics in a pouch stapled to the inside.  Long story, short:  It took them until freaking July to get approval from the insurance company and surgery scheduled.  Wow.

So, last week we had it done.  She did fine, all things considered.  She’s still puffy and swollen and eating soft foods.  But we’ve weaned her off the hardcore pain meds and she’s taking ibuprofen and sleeping well.  Only she keeps telling me that “Dr. Brown is a bad, bad man.  Put tooth back on.”  Perhaps she’ll think differently when she’s able to eat fried foods and drink through a straw again.

So, while Randa has been recuperating, I took Ismail and Aiman to the dentist for a regular check up.  Ismail’s wisdom teeth also appeared to be ready to come out.  This dentist sent us to an oral surgeon just 10 minutes up the road from us who actually takes our insurance.  (Had I known back in February….*sigh*)  We went yesterday and had the appointment and yes, he needs them yanked out.  We should be hearing back next week and he should be recuperating in two.

It used to be that Summer vacation time was about road trips, running through sprinklers, and eating popsicles.  Now it’s about not missing school days while you recover.  At least there are still popsicles.

Mothers and Daughters

It’s been relatively quiet this Summer.  Mostly because the two youngest have been taking accelerated courses (Physics and Economics/US Govt) to get them out of the way for the Fall. The two older boys have been working and Randa and I have been sleeping in a lot and just hanging out.

But there are only two days left of Summer school and then Sam is off to visit her grandparents for a while.  And I’ll be lost without her.  The boys will either be working or sitting in front of their devices all day/night.  Randa will be here hanging with me like usual.  But our relationship is different than mine and Sam’s.  Randa’s is more physical with hugs or shouting, whichever she needs to do at the time.  I like Randa.  She likes me, most of the time.  But there’s that level of dependency and seemingly a boundary that isn’t crossed.  It’s not for a lack of wanting to be closer.  It’s just the dynamic of us.

Sam is actually more like a friend.  We have the mother-daughter relationship that is so close to friendship that we actually enjoy each other’s company.  It’s not just me wanting to hang out with her.  She actually enjoys being around me and has farted off friends to stay home with me.  I love that.  It’s the type of mother-daughter I longed for with my own mom but never really had.  I’m so happy that I have it with my daughter.

And I’m going to miss the crap out of her next week.

Welcome Home, Hero. Rest in Peace.

This was not the first military funeral I had attended.  It was the first time I’d been to any funeral that took place 76 years after the deceased had died.  This young man, a kid the same age as my third of five children, has finally made it home to be put to rest with his family in a hero’s ceremony.  Seaman First Class George Anderson Coke, Jr. came home to Arlington today for the first time since he left for boot camp back in 1941.

My friend, Leslie Dorn Barton, is George Coke’s second cousin once or twice removed.  I’m still unclear on all that genealogy stuff.  While I’d like to be able to trace back my family tree, I’m quite unorganized and tend to think circularly rather than in clear straight lines.  Besides, I’ve got aunts and cousins on both sides of my tree who really dig that sort of thing and they actually journal it all. Anyway, Leslie is one of the Special Education teachers who taught my daughter at Sam Houston High School. We became friends over the last couple of years. So naturally, when she mentioned that this funeral was happening today, I told her I’d come.

It’s been hotter than ever all week and I was so relieved when the thunderstorms hit our city last night and it rained until the wee hours this morning.  I donned my black abaya and a gray and black scarf and then headed over to the First United Methodist Church and tried to “blend in” with the Arlington locals.  I know.  I didn’t. The sole Muslim in a sea of mostly older, white, Christian faces.

I listened to the history of George Coke, Jr., son of George Coke, Sr., who was the Chief of Police in Arlington back in the 1920s.  I learned that of the 3,500 American casualties that day in Pearl Harbor, that Arlington lost 48 souls.  My mind wandered, as is the norm during funerals.  Everyone in some way or another is reminded of their own immortality at a funeral.  With military funerals, you are also reminded of all of your family members and friends who also served in the armed forces.  I felt a few tears escape today as I remembered friends who were killed in foreign wars.  I felt a few more tears escape as I offered prayers of thanks and gratitude for those family and friends who returned safely home.

I followed the funeral procession to Parkdale Cemetary. We were escorted by members of the United States Navy and a large number of the Arlington Police Department.  I watched as the sailors, now pallbearers, respectfully carried the remains of their comrade who fell in the line of duty more than half a century before any of them were born.  And the firing of the three volleys, though I knew they were coming, still caught me off guard and those tears of relief that most of my loved ones returned to me fell from my eyes as a silent salute to Seaman Coke and all of the thousands who didn’t.

My heart stirred as I watched the slow and deliberate movements of the sailors folding the flag and the hand off of that folded flag followed by the final salute from Seaman to Non-Commissioned Officer to Officer to Rear Admiral and finally to George Coke, Jr.’s family members.  The spent shell casings from the three volleys, symbolizing duty, honor, and country, were then placed into the hand of the young descendant of Seaman Coke.

A cool breeze gently blew across my face, air-drying the silent tears and leaving my cheeks a little bit sticky.  I hugged Leslie and shook hands with her son, aunt, and mother.  I looked back to see the final resting place of Seaman Coke, under the Live Oak and the Crepe Myrtle trees, beside his mother and father.  Welcome home, hero.  Rest in peace.

 

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.

Milestones

Tomorrow afternoon will mark a big fat milestone in our lives. Two more of our five kids will be crossing that stage at their high school graduation. This isn’t the first time we’ve done this. So why am I so overwhelmed with the feels of it all?

Randa is 20. She’s our “special needs” kid and while eligible to stay at the school for one more year before she ages out of their Alternate Curriculum program, she is bored. She wants to graduate NOW. They told us going in that there was going to come a time when she is going to advance past what they are able to teach her. That time has come. Many would argue that she could mainstream into the general education population. That is just not a possibility with her issues. So we’re going to do more Mommy-Randa stuff starting next Fall. We’re going to visit museums and family members around the Metroplex and take some classes at the fabric store and learn to sew and join a water aerobics class. Randa is excited to start the next chapter after Sam Houston High.

Ismail is 18. He, like his older brother before him, seems to be struggling with the excitement of graduating versus the sadness and anxiety of leaving behind all he knows. I am guessing that boys are like this. (I wouldn’t know, having never been a boy.) He is suffering today as he paces around and asks questions to which he already knows the answers. He’s spent a lot of time on the front porch. Being outside calms his nerves. He is still not certain what he’s going to do. He wants to become an electrician and be a man and not have to answer to his parents and buy a car and get a job, and all of the swirling plans that all boys his age have.

But Ismail is still so tender-hearted in so many ways. And his family is all he’s ever known. No matter where we lived on the globe spanning three countries and several states, we’ve always had each other. The idea of moving away to another part of the state to go to school without his safety net is so intriguing and exciting and altogether scary. So he’s put off making firm plans as of yet. He wants to take a little time off and work. And that’s okay. Ismail has always been one who needs to chew on his idea before he spits out his final answer.

And tomorrow as I stand on that stage, holding Randa’s hand to help her to battle back the anxiety as she walks across toward the end of her high school tunnel, I’ll be watching Ismail, one place ahead of her in the alphabet, reaching his. I’m so proud to be their mother.