Starry Night Prom 2018 Fundraiser Kickoff!

2016-05-23 16.46.06

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.

 

 

 

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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.

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.

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.

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.

6 Days Left

Starry Night Prom 2015 SWAG BAGS

These are STARRY NIGHT PROM goodie bags from our 2015 prom. These customized backpacks were donated to us by the Elks Lodge #2114 in Arlington, Texas. We stuffed them full of swag for each of our attendees; AISD High School students with significant disabilities. The swag included a customized Starry Night Prom 20-ounce cup, pens, pencils, keychains, compact mirrors, coupons and gift certificates from many local businesses, toys, stickers, magnets, and other cool items. Each backpack also contained a STARRY NIGHT PROM commemorative t-shirt with all of our big sponsors printed on the back.

So all of that stuff inside the goodie bags? FREE for our students who attend. You know what else is free? The meal for each of them (and for one attending chaperone guest per student,) the prom portrait photography, the prom fun photo booth style photography, the boutonnieres and corsages, the beautiful custom made invitations, the dessert fountain, the DJ and big dance floor where they can dance and have a wonderful time. All of this is paid for by the donations of kind and generous people who want to see these kids have a magical Starry Night Prom.

And even though a lot of the swag, backpacks, venue, services including cooking and catering are donated as in-kind donations, we still need money to pay for the photography, DJ, printing of invitations, shirts, cups, decorations, additional swag, and a large portion of the food items that are purchased each year.

Our ongoing FACEBOOK fundraiser event is still active for 5 more days! Facebook has waived all of their usual fees for registered  501 (C) (3) nonprofit organizations with Facebook pages during the #GivingTuesday fundraiser drive. This means that 100% of all donations made via the Starry Night Prom Facebook page will be donated to our noble cause.

Won’t you please consider donating to Starry Night Prom and give these kids their magical night this Spring 2017? All donations are 100% appreciated. Thank you for your support.

 

 

Starry Night Prom Fundraiser in Progress

Randa and Hamo Prom 2014

So, what’s it been? About 12 minutes since I wrote about Starry Night Prom? I can’t help it. These kids are so stinkin’ precious and seeing them celebrating their prom in a safe and accepting environment is just a truly moving experience.

We are currently in the middle of a Facebook fundraising drive. What’s awesome about this one is that Facebook has waived all of the usual fees they collect during their #GivingTuesday campaign. This means that 100% of all donations contributed through the Facebook fundraiser through 15 December 2016 will go directly to Starry Night Prom. And since Starry Night Prom is completely run on the generosity of others, this is HUGE.

As some of you are not already aware, I’ll explain a little about Starry Night Prom. We are a registered 501-C3 nonprofit organization serving Arlington ISD high school students with significant disabilities. We host an annual prom for these kids and a chaperone and all of it is paid for 100% with donations. So their invitations, corsages and boutonnieres, photographs, food, deejay, and goodie bags complete with commemorative t-shirt (sponsors printed on back) are all FREE. A lot of these kids would have to miss out on their high school prom. There’s usually not a lot of accommodations for those who have feeding tubes, oxygen tanks, wheelchairs, or need for assistance in the bathroom, etc. Starry Night Prom takes all of that kind of stuff and makes it the norm. The social playing field is leveled and everyone is “at home” in their gorgeous ball gowns and tuxedos. Spring 2017 will be our tenth year hosting Starry Night Prom.

Won’t you consider making your #GivingTuesday contribution to Starry Night Prom? Please follow this link for our Facebook Fundraising Campaign———–> CLICK HERE

And if you don’t have a Facebook account or would prefer to donate through a different site, you could follow this link for our YouCaring.com account* by clicking –> HERE. (*Donations to the YouCaring site will have transaction fees added by YouCaring, but will remain open through May 2017.)

Thank you so much for your sponsorship. We also accept In-Kind donations, so please drop me a line in the comments section and I can provide information on how to sponsor us in this way. And for those of you who are in Texas and Louisiana, you can link your Kroger Plus shopping card to Starry Night Prom under their Community Rewards program, so that Kroger will donate to Starry Night Prom with every swipe!

(ALL donations, big and small, money and in-kind, are GREATLY appreciated and tax-deductible.)

It’s NOT a Tantrum

Walking through a supermarket, the severely Autistic person wears gun-range headphones to help block excess noise to protect her highly sensitive hearing from the overwhelming barrage of clanking, banging, muzak, baby cries, squeaky buggy wheels and blips and bloops from cash registers. A woman getting over a cold coughs into her elbow, and the Autistic person’s face grows dark. Her mother notices the scowl and the wincing on her non-verbal daughter’s face. She puts the Cheerios back on the shelf and grabs her daughter’s hands and softly speaks into her face, “Poor lady. She’s sick. Sick people cannot help coughing, honey. It’s okay.”

The mom gently guides her daughter from the cereal aisle and the cussing begins followed by screaming and crying. “Ears hurt! STUPID WOMAN!” People begin to stare. Some people whisper and make angry faces. The screaming continues while the mom gives deep pressure hugs and wipes away tears, speaking gently about good choices and soft voices.

An angry woman walks by with her nearly full buggy with the squeaky wheel and stops to SHUSH! the girl. The mother spins around on her heel and tells the woman she is out of line. “You should shut her up! It’s incredibly rude to the other shoppers for her to be throwing a tantrum in the middle of the supermarket! What is she? Retarded?”

“First, she’s got Autism and she is in distress, NOT that we owe you an explanation. A tantrum is a fit thrown in order to get what one wants. This is an Autistic Meltdown which is brought on by environmental situations. What makes them continue is rude judgmental people like you! Secondly, this is Kroger. If you want quiet, go to the fucking library!” The mother turns her back on the sputtering woman, who has now become just another bit of background noise. The girl continues to cry and loudly repeat the same line from her favorite movie, as though stuck on a loop.

The store manager walks up and smiles. He knows the woman and the daughter, as they are regular shoppers here. He asks if everything is all right. The woman nods that it is. The girl notices the manager’s very large mustache and points at his face. “It’s big whiskers!” she says, wiping away her tears. The man laughs and agrees that they are. The girl smiles and says, “Bye. Come on, Mommy. It’s Cheerios.” The mom grabs the hand of her 20-year old girl and mouths a quick thank you over her shoulder to the manager. She returns to the cereal aisle and adds the Cheerios to the buggy while the girl happily pushes beside her.

 

Bad-Assery in the Metro

“Thanks for going shopping with me, Randa.”

“You’re welcome.”

“Got your seat belt on?”

“Yes, ma’am.”

“Should we take the highway home or the slow way?”

“It’s drive faster.”

“Okay. Highway it is. Should we listen to the radio?”

“Yes.”

**Turn on radio and Nickelback is playing.**

“Mommy, this sucks.”

**Change to a rock station playing Aerosmith** “Better?”

“Yes, ma’am. Mommy drive faster.”