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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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.

Our 10th…and Possibly FINAL Starry Night Prom

The 2017 Starry Night Prom is scheduled for this coming Saturday, April 29th. It is our 10th annual prom…and it may be our last.

This year, Starry Night Prom is drastically underfunded compared to previous years. Will you help our Arlington ISD friends have a magical night at the Starry Night Prom?
Click here if you are feeling like a big giver ——–> and DONATE NOW.

If you own or work for a company that may want to help sponsor Starry Night Prom, we can offer you a tax-deductible receipt, AND for giving $250 or more (money or goods), we can offer you a spot as a NAMED SPONSOR on the back of 300+ t-shirts IF YOU DONATE WITHIN THE NEXT 48 HOURS (that’s when the back of the t-shirt goes to print.) Click on THIS LINK TO DONATE MONEY. If you want to donate in-kind donations, then please either comment below or contact our Vice-President of Donations by emailing her at StarryNightProm@outlook.com and let her know you want to help.

Here’s a list of the specific goods we still need:

  1. SWAG BAG stuffers (use this opportunity to advertise  your company and provide us with logo-bearing items such as lanyards, cups, refrigerator magnets, trading cards, stickers, pens, pennants, hats, shirts, or coupons.) We have 151 bags that need stuffing.
  2. CHOCOLATE FOUNTAIN FOOD: We need chocolate syrup for a chocolate fountain to feed 325 guests and also the foods to be dipped: Strawberries, Bananas, Marshmallows.
  3. CAKES/DESSERTS for 325 guests: Please avoid peanuts and/or nuts of any kind due to allergies of many of our guests. Thanks.
  4. VEGETABLE and POTATO DISH for the meal for 325 guests.
  5. FUNDS TO PAY FOR 300 MYLAR BALLOONS for decorations.
  6. LUNCH for VOLUNTEERS who will be decorating and setting up on Saturday.

For any of the above-listed items, please contact our VP for Donations via email ASAP. You can reach her at StarryNightProm@outlook.com.

PLEASE SHARE THIS POST TO ANYONE WHO MAY HELP OUR 10th STARRY NIGHT PROM TO BE THE BEST YET!

(Click on the SHARE links below to share this post via Facebook, Twitter, or Google+, or you can share the URL via email. Thank you for getting the word out and helping us to host our 10th annual STARRY NIGHT PROM.)

 

Prom Season is Upon Us

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I’m not going to lie to you. We NEED money. Hosting a prom each year is expensive. But STARRY NIGHT PROM is doing everything in its power to continue keeping this event cost-free for the Arlington ISD high school students with significant disabilities and their chaperone. It truly isn’t easy. But here’s how you can help.

Donate: If you could just provide us with as much as you are comfortable with donating, it could make all the difference in the world. Each and every donation, regardless of amount, is greatly appreciated. To reach our secure fundraising site, please click on this link———————————> RIGHT HERE!

Share:  Please share this post. Circulating this blog post among your friends via your social media outlets can assist us in reaching even more potential donors. This can make all the difference in the world. Please click on the Facebook, Twitter, or email links below to help our cause.

In-Kind Donations:  If you own a business or represent an organization that would like to sponsor STARRY NIGHT PROM by in-kind donations of logo-bearing promotional items (such as pens, pennants, t-shirts, hats, refrigerator magnets, keychains, lanyards, drink koozies, etc,) please email me here———————> starrynightprom@outlook.com.

We are also accepting gift basket items to be raffled off during the event, 29 April 2017. If you have a gift basket that you would like to donate for raffle, please contact me at the email address above.

ALL DONATIONS ARE TAX-DEDUCTIBLE. STARRY NIGHT PROM IS A REGISTERED 501 (C)(3) NON-PROFIT ORGANIZATION.

STARRY NIGHT PROM 2017

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This kid right here? He’s having a blast, dancing his heart out at the Starry Night Prom last year.

2017 will mark our TENTH ANNUAL STARRY NIGHT PROM! Can you believe we’ve been doing this for an entire decade? We decided to celebrate that fact by throwing an even better prom this year than we did last year. But in order to do that, we need your help. This prom is run entirely on donations. Yes, that’s right. The invitations, corsages and boutonnieres, decorations, food, DJ, desserts, photography, commemorative t-shirts, swag bags and everything in them: ALL donated or paid for with your donations. Even the people who provide service on this night- all volunteers.

And throwing an event like STARRY NIGHT PROM each year is not cheap. So we’re calling on you to help us out. Please donate to help us reach our $6000 goal and make this magical night a reality for these kids within the Arlington ISD. Just click on the highlighted link below and you’ll be directed to our crowd-sourcing fundraiser site.

CLICK HERE TO DONATE TO STARRY NIGHT PROM 2017!

If you own a business and would like to donate logo-bearing in-kind donation for swag bags, please contact our Vice-President of Donations by emailing her here: starrynightprom@outlook.com

If you have other in-kind donations that you’d like to donate, such as gently used prom dresses or tuxedoes, or if you’d like to purchase and donate food items or gift cards to local grocery or department stores, swagbag items, etc., also please contact our Vice-President of Donations via email: starrynightprom@outlook.com.

Remember EVERY donation is appreciated and we will provide  you with a tax-deductible receipt.

**STARRY NIGHT PROM is a registered 501(c)(3) Non-Profit Organization.

Trades of Hope Charity Event

Have you heard of “Trades of Hope?” It’s amazing. This company empowers artisans all over the world and allows them to earn a sustainable living while helping their own communities.

trades-of-hope

Some of these artisans are healed members of leper colonies who would are unable to reenter their own society in order to work. Some have been removed from the slave-trade or sex-trade. Some are in extremely impoverished areas of their country. These artisans are in Kenya, India, Uganda, Haiti, Cambodia, the U.S.A., and others. What do they have in common? Amazing talent in artistry.

How does Trades of Hope help Starry Night Prom? It doesn’t directly. But we really respect the company and what they’re doing. We also truly dig that the Trades of Hope distribution center in Florida hires people to package and ship out the purchases through another non-profit, The Arc. The Arc is for people with Intellectual and Developmental disabilities: Exactly like some of our students who attend Starry Night Prom!

So when Naunie Lobaugh, a compassionate entrepreneur with Trades of Hope, came to us and suggested that we host a fundraiser with her, we were intrigued. Then when she offered to donate to us 100% of her commissions from this fundraiser, we were 100% gratefully intrigued. And here we are. Bringing you the work of some of the most amazing artisans from around the world. Please help 3 different groups with one purchase from this Trades of Hope Charity Event. (Or you know, MANY purchases. You know what your bank account looks like….go ahead. SPLURGE.)

We’re holding this Trades of Hope Party on Facebook. So if you want an invite to this party, hit me up in the comments section below and I will send you an invite. OR…you can click HERE TO SEE THE CATALOG AND ORDER!

If you’re local in the DFW area and would like to see some of these items showcased, then you are cordially invited to the Elks Lodge #2114 at 601 W. Pioneer Parkway, Arlington, TX 76010 this Saturday morning from 10a.m. to 12noon. Naunie will be showing samples of the Trades of Hope items for sale. You can place orders there and there will even be drawings and prizes. Come on out (or online) and SHOP WITH PURPOSE! Support Trades of Hope and Starry Night Prom.

(This fundraiser will be open until 11:59pm on 1 February 2017. That way your purchases will arrive before Valentines Day!)

 

 

 

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.)