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.

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.

Starry Night Prom 2018 Fundraiser Kickoff!

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Starry Night Prom is about to kick off its 2018 Fundraising efforts by participating in the #GivingTuesday fundraiser.  We have updated our own fundraiser on the YouCaring website and we’ve set up our #GivingTuesday fundraiser on Facebook. And guess what!  Once again, Facebook is waiving their usual fees for all donations made from 12:00am EST on November 28, 2017 to 11:59pm HST on November 28, 2017.  Isn’t that awesome?  But wait!  That’s not all!

On #GivingTuesday, Facebook and the Bill & Melinda Gates Foundation will be matching up to $2 million of funds raised on Facebook for US nonprofits.  For more information about the matching, please click RIGHT HERE TO THE GivingTuesday Information on Facebook.   

Please donate to this magical cause and level the social playing field for some of Arlington’s most amazing students.  Support the Starry Night Prom! Thank you.

 

 

 

XX Year Anniversary of XXIX

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I woke up to that awesome “wall of guitars” this morning.  I was intrigued, yet slightly annoyed, that someone was in my bedroom playing a hauntingly echoing version of Metallica‘s “Enter Sandman” while I slept.  Then I remembered that I had changed my ringtone on my cellphone the other day.  So I pulled my phone out of the trash can by my bed where it had fallen last night when I tried to put it on the night table and attempted to say hello.  I heard my brother-in-law’s cheerful voice saying, “Happy birthday.”  I tried to say,  “Thanks.” It sounded more like a grunt, but he interpreted it as “Congratulations! You won the ‘I got to say Happy Birthday first’ game.”  His linguistic skills were spot on.

After he handed the phone of to my sister to claim her second-place finish, and I checked my text message from my brother who technically was first since he texted at 12:18 a.m., I reflected on some things.  Today  is the twentieth anniversary of my twenty-ninth birthday. That’s a lot of 29s.  And I am nowhere close to the goals I’d set for myself when I was a young teenager.  But that’s good. At this point, my career as a “medical examiner who moonlights as a hot bathing suit model” would probably be washed up.  I’ve got a mom-body, complete with extra padding for warm, sincere hugs and my cooking skills are A+ since my food doesn’t taste like medical hand soap and formaldehyde.  I’m good.

Unlike me at the original 29 year mark, I have built my patience up to tolerate early morning phone calls with honest laughter.  I left my not-so lucrative career of seventeen years to become a broke, stay-at-home-mom who blogs and over-volunteers at the school and with a favorite non-profit organization.  On the “How Tidy is My Home” scale, I still only rank about a 6 on average, maybe a 7.5 if I have more than 15 minutes notice that someone is en route to see us.  But as long as we’re not wallowing in filth (read: I’ve mopped once this month but forced the kids to vacuum a few times) and we aren’t qualified to be featured on “Hoarders,” I’m okay with it.

And while I complain about the little things that annoy the crap out of me, like being the chauffeur of shame hauling young adults to and from work, college, high school, and various volunteer and social engagements, I know that I have a great life.  I genuinely LOVE my family and my friends.  (Thanks, Venetia, Sara, and Cindy, by the way.  The three of you have been my first truly best friends (who don’t share a mom with me) in many years and you have no idea how great that feels or how much I appreciate it.)  I have a home that is large enough to house us all comfortably.  My husband works a job where he is home every evening around the same time and no longer has to travel for extended periods.  And we sit down to dinner every single night together. Yes, we eat as a family every day. I have a great life. And I’m so grateful to Allah for providing this.

I have decided to carpe the crap out of this diem.  I’m going to make a B.A.B.B. (that’s Big Ass Birthday Brisket) for dinner and maybe let my daughter help me choose a birthday cake. (It’ll be chocolate so the masses will be happy. I may get myself a lime popsicle or something, so that I will be happy.)  And I will sit back and allow them to do all of the chores for my big, fat celebration of ME.

**The dirty little garden gnome? No. He has no real significance to this story. I just like him and decided he’d make a lovely thumbnail for this blog post.

 

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.

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.

 

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.