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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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.

 

The Beauty in Asking for Help

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We got off to a late start again this year. Several of us had medical issues that affected our family lives that sort of forced us to put Starry Night Prom fundraising on the back burner. But it’s become known to us as “the little Prom that could” and it can.

I started promoting our fundraising website and blogging about past Starry Night Proms that we’ve participated in. I updated the donation letter and the giving levels list and then
added a few photos from Starry Night Prom 2015 to the fundraising site. But I needed my
son to finish recovering from his surgery and get back to school so that I could sleep longer than 3 hours at a stretch and be able to focus my energy on donations and not trying not to drive my car off the road because of the twitch in my eye.

So Saturday afternoon I sat down at my computer and began to send out emails to anyone I could think of that might have an interest in getting this thing off the ground. And on a whim, I contacted a local businessman whose service my husband and I have used on several occasions since moving to Arlington. I explained that I recognized that his company is a fixture in this community and that I see his vans all over the city almost every day while I’m out running my errands. I told him how Starry Night Prom got started
nine years ago and how every expense is paid for by the generosity of others. I asked for help.

Sponsorship to an event such as Starry Night Prom looks different for every donor. Some may donate gently used prom gowns or suits. Our photographer, DJ, and dinner are all sponsored. Sometimes logo-bearing “swag” is donated that we can include in the goodie bags that each student gets to take home; things like pens, hats, cups, refrigerator magnets, lanyards, keychains, stress-squeezers, calendars, etc. Some businesses choose to donate coupons or gift cards. We’ve had restaurants donate a meal for two, a hotel donated one free double-occupancy night, and a university donated a gift basket full of logo-bearing sports gear and free tickets to events…all of these items were raffled off and the monies collected went into the Starry Night Prom fund. And of course, they can choose to make a monetary donation.

Monday morning, Mr Ernie Clevenger, owner of Ernie’s Plumbing, read my email and then clicked on the link to the online fundraiser website. He told me that he enjoyed the bright smiles on the faces of the participants that were featured on the site. He also noticed that we only had three weeks left to meet our goal and we weren’t even halfway there.

Ernie’s Plumbing made it happen and donated the remaining funds to reach our target! His only comment on the website? God is good.

And that is the beauty in asking for help. Because Ernie is right. God IS good. And when you ask for help, He will provide.

****Further donations of goodie bag items for 300+ prom participants are still being accepted for receipt before April 28, 2016.  All donations are appreciated and tax deductible. Please contact me via email at: StarryNightProm@outlook.com  I will gladly provide you with any further information within 24 of receipt of your email. Thank you.

 

 

More Starry Night Prom 2015 Photos

In my previous blog post about the Starry Night Prom 2016 , I published before I could locate my cd with photos from last year’s prom that weren’t just snapped with my very lousy camera phone. So I thought I would post a few photos of some of our awesome participants at the Starry Night Prom 2015 so that you could see the FUN on their faces.

Enjoy.  And to all of our supporters from last year and years past, THANK YOU!

Anyone who would like to support our efforts to host Starry Night Prom 2016, please
CLICK HERE ——————-> FUNDRAISER LINK!

Anyone who wishes to donate items for the “goodie bags,” or corsages/boutonnieres, decorations, gift cards, or anything else, please contact us via email at:
StarryNightProm@outlook.com. Or visit our Facebook page at www.facebook.com/starrynightprom  and post there.  Thanks again for your support!

**Photographer credit: Amber Inman Photography. All photos used with permission of Starry Night Prom.

 

 

 

Starry Night Prom 2016

Randa SNP2015
It’s that time of year again! That’s right. It’s Prom Season. And the Starry Night Prom 2016 is coming up on us….fast!

“What’s the Starry Night Prom?” you ask. Let me tell you by including part of our Starry Night Prom donations request letter:

“The Starry Night Prom started in 2008 with a vision to create a once-in-a-lifetime prom experience for Arlington ISD high school students with significant disabilities.

Taking the vision from AISD special education teacher, Sara Mayo, Chase Christensen developed his Eagle Scout project around creating the Starry Night Prom, along with Boy Scout Troop #396 and the Arlington Elks Lodge #2114. Now an annual event, the Starry Night Prom is heading into its NINTH year of throwing an all-inclusive prom! Students with significant disabilities and their chaperones are treated to beautiful invitations to attend prom, a sit down dinner, professional photography, corsages and boutonnieres, dessert fountain, a prom king and queen, goodie bags, and, of course, a huge dance floor with a DJ, all at no cost to the student or their chaperone.”

randa-and-hamo-prom-2014

You see at an average prom, there is little in the way of accommodations for those students who have significant disabilities. Some of these students cannot eat without assistance or the use of a feeding tube. Some need assistance in using the restroom or cannot swallow and must use a suction machine. Then there are those who have dietary restrictions or sensory issues that must be taken into consideration. Add into the mix the peer pressure and “everyone is looking at me” feelings that most high school students are experiencing at this time of their lives, and you have kids with disabilities bowing out and missing out on one of the most memorable nights of their school years.

The Starry Night Prom helps make this night special for these kids. My daughter is a junior this year. She is severely autistic and has sensory issues, mostly related to noise. She wears noise canceling headphones that block 21 of every 23 Db of sound. This is because she has incredibly sensitive hearing and too much sound or too loud sound can cause her head to ache and this hurts and frightens her. So to see my daughter in a formal gown with her bling and sequins veil in a pair of pink headphones is just the norm at Starry Night Prom. The DJ takes these types of sensory issues into consideration of our Prom participants, and never blasts the music too loudly and never uses strobe lights.

Shelby and Randa dancing SNP 2014

Starry Night Prom is a recognized 501-C3 Non Profit Organization and all donations are tax-deductible. Would  you consider donating to the Starry Night Prom 2016, being held Saturday, April 30, 2016? Over 300 people attended Starry Night Prom 2015. In kind donations are needed in every area, from items for our prom “goodie bags” to food to serve 300 guests. Financial donations of any amount are also needed, as 100% of all financial donations go to purchasing items for the Starry Night Prom. A tax deductible receipt will follow your donations, as will a public thank you letter supplied to all prom attendees and donors.

This is a program that I believe with all my heart. I never thought that my daughter would be able to participate in her prom. But Starry Night Prom leveled the playing field and, as you can see from the photos shown here, she just sparkles like a princess and thoroughly enjoys herself in a social setting that she would otherwise have to skip.

Please consider donating to the Starry Night Prom 2016. You may click here to be directed to our fundraiser website—–> STARRY NIGHT PROM 2016 DONATIONS

If you would care to contribute to goodie bag items, please contact us via email:
StarryNightProm@outlook.com or like us on our Facebook page: www.facebook.com/starrynightprom .

**All photographs are property of Nikki Mohamed-Fawzy and Sara Mayo and are used with permission.**