A Starry Night Setback

I was saddened just now to read on our Starry Night Prom fundraiser page the following message from #GivingTuesday:

” #GivingTuesday Match Report

On Nov 28, we raised $45 million for causes around the world. Unfortunately, your fundraiser didn’t receive a match this year, but from all of us at Facebook, thank you for being part of our fundraising community.”
We were really hoping that the matching would kick start our fundraising efforts to alleviate the usual last minute scramble that we do each year.  But that didn’t happen.
The good news is, I am an optimist.  This is part of the uniform we Vice-Presidents of Donations wear.  And so, I will polish my Donations Star, put it back on my chest, and continue to raise money for this truly amazing cause for an even more amazing group of kids.  Our silver lining is that we have raised $869, so far, toward the 2018 Starry Night Prom.  And that is $869 that we did not have on Cyber Monday.
That said, good donors and potential donors, we still have until December 5, 2017 to raise more money for this fundraiser.  Please give.  We truly appreciate your support.  Please share these posts, even if you have already donated or are not in a position to do so at this time.  Perhaps someone on your friends list will be able.  Thank you.
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Set Your Alarms for 8 O’Clock Tuesday Morning, Y’all

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We are so excited! Tomorrow is #GivingTuesday.  We are so stoked to be participating in the fundraising again this year.  You know what is so cool about giving on the 28th of November, though?  Facebook AND the Bill and Melinda Gates Foundation will be matching all nonprofits donations after 8 a.m. on Tuesday, 28 November 2017, up to $50,000 until 11:59 p.m.!  Yes, that’s right.  That means that if you donate $20 to us tomorrow, Starry Night Prom will receive $60.  Isn’t that the coolest?!

So, please, anytime after 8 a.m. EST tomorrow, please click on THIS SECURE FUNDRAISER LINK and donate whatever you feel comfortable giving to help our cause, and those funds will be matched.  We appreciate your help.  Your generous donations are how we are able to provide an all expenses paid prom for the Arlington ISD high school students with significant disabilities each year.

Starry Night Prom is a registered 501 (c)(3) Non-Profit Organization.

It Doesn’t Mean I Don’t Love You

When a woman decides to leave the business world to stay at home and take care of her family, it is a huge decision.  Sometimes men, and even some women, think that it is a choice that these women come to quite easily; that it is their “nature” to be in the home raising the children.  Perhaps for some, but most of us have usually reached this decision based on how exhausted we are from balancing both home and work fronts, how wasteful it is to spend 3/4 of our paychecks on daycare, and the amount of guilt we deal with by missing all of those “firsts” that our kids experience and the amount of crud they are ingesting because no one has properly swept under the kitchen table in months.

I left my career of seventeen years to stay at home with my five children because of all of those reasons.  And within two months of that income and health insurance loss, we sold everything we owned and bought plane tickets and moved to Greece. A month there was also a bust.  So we used a little of my 401(k) that we withdrew and bought more plane tickets and moved to Egypt.  We bought a little flat and a micro-bus and lived fairly well, for the next twelve years.  But then things changed and I was ready to come back to the United States.

My husband found work in the North Texas area and bought us a little house.  I packed up our stuff, sold all of our furniture and appliances and the flat, and headed for the airport with the kids and all the luggage we could strap onto the micro-bus.  And things were good and three of the five kids have graduated high school with two more cued up to receive diplomas and march on with their lives to “Pomp and Circumstance” as their soundtrack.

But they’re all still living at home and I’m not getting much accomplished anymore.  The list of things to do each day is getting longer for me.  And I still have this lovely linen fabric I bought to make curtains YEARS ago and still haven’t had time to make.  I have two novels and a book of essays that I started but cannot complete because I no longer  have free time to devote to them.  I want to go back to college, even if only online, but cannot justify the financial obligation when I cannot meet the time obligation it would require to get my degree.

I no longer feel fulfilled by completing all of the laundry, dishes, shopping, cleaning, dinner preparation, homework checking, bill-paying, and volunteer work.  I want more. And my husband feels hurt when I tell him that it’s not enough anymore; that I want to work outside the home.  He feels that he is not providing enough for us and that I must prop him up.  While we could definitely benefit from additional income, that’s not the main reason that I want to do it.  It’s about self-fulfillment.

I don’t understand why so many men take it as a slight when their wives want to return to the workforce when their children have grown out of the needy stages.  Perhaps I am too American or Western in my way of thinking, but I believe that this is a necessary step in their upbringing.

If teenagers and young adults are left to meet their own scheduled obligations, learn their own medical history, learn how to manage time and money and make meals for themselves and the family, then they benefit in real-life situations that they will be facing when they leave our home.  If the special needs young adult, who is at home and needs supervision, is looked after by her siblings for a few hours several days a week, the overworked and unpaid mom can get the required respite care she needs.  This can give her the energy to continue with her care giving without the resentment that she may end up feeling if she isn’t ever given any relief or assistance in her duties.

When the SAHM decides that she wants to reenter the workforce, or says that she no longer finds this work fulfilling, it doesn’t mean she won’t care for the family anymore.  Sometimes in our efforts to care for our families we lose our own identities and the lines between individual and the title of “wife” or “mother” become blurred.  It means that she’s been caring for the family for so long that she has not taken the time to care for herself.  Let her do that.  Support her.  It doesn’t mean she doesn’t love you.  It means she needs to love herself, too.

 

 

 

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.

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.

 

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.