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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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.

In Memoriam

The doctor is not in. He is no longer accepting new patients. He is gone. There will be no referrals. You’re on your own. It’s just as well. No one could fill his shoes anyway. His title was honorary. He wasn’t really a doctor. He was a pipe-fitter, master mechanic, automotive hobbyist. He was known as Dad, Uncle Tracy, Mr. Tracy, and Honey. (His grandkids call him Honey.) To me, he will always be Dr. Tracy – the brain surgeon who earned his title teaching his teenage daughter how to drive a 3-on-the-tree manual transmission pick up truck as I sat between them. “If this truck is in first gear, then I’m a brain surgeon!”

When Dr. Tracy called me back in January to let me know that he was terminal, I was at the high school doing volunteer work. He seemed matter of fact and could just as easily have been telling me that he’d sprained an ankle.  Being the walking Kleenex commercial that I am, I sat down and started to cry.  He got upset that he’d upset me. I guess that’s always the way with any terminal disease, isn’t it? The person who is doing the dying always spends his last days consoling those who aren’t.  He said, “Now see? I shouldn’t have told you. I knew you were at the school, and I’ve gone and upset you. I didn’t call to make you cry or beg sympathy.” Well, then the tears were replaced by anger. (Yeah, I’m an emotional funnel cloud some days.)

“Look here, Old Man!” I told him (without shouting because he is still my elder.) “I love you almost as much as I love my own daddy. So, you’ll allow me the privilege of crying for you.” Aside from my dad, husband, and brother, there is no other man I’ve loved more.

It took a few weeks to arrange things here in Texas before I could get down to see him. While my five children are mostly grown, there are still 4 in high school, one of whom is “special needs.”  My siblings took turns heading from here to Mobile to visit with him. And then it was my turn. And I think for each of us it was similar. We arrived at the house and had something to eat at the kitchen table with him. Then we held down that kitchen chair talking to him, laughing with him, reminiscing with him until it was time for us to head back to Texas. Our cousins from Alabama, Mississippi, and even New York, traveled down to Mobile to sit on that chair and love on him these past few months.

Aunt Ginger and Wendy have both told me how “tickled he was” that we took the time to come visit with him. And I think that I speak for all of us when I say that we wished we could have done more. You see, Uncle Tracy was not our “blood relative.” He married our Aunt Ginger more than 54 years ago and he seemed to think that he was an “in-law” to all of us. He seemed genuinely surprised by the number of his nieces, nephews, and grandnieces and grandnephews whose lives had been touched by him. Most of us had known him as long as we’d been alive and had gotten advice from him about various mechanical issues, or home repair issues, or just chewing the fat. He’s family. However it was that he joined it, by birth or by marital bond: He’d been part of it longer than any of us.

Our family is short by one tall member today. And while we mourn our loss of him, we rejoice that he is no longer suffering the pain that he endured for these last months. The good doctor will always be with us in spirit and in memory. And every time I start to drive after accidentally putting my car in third gear rather than first, I know that there is a brain surgeon smiling down from Heaven at me.

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.

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.)

THIS IS ONLY A TEST!

Like most of the “popular vote,” our family mourned the election results on November 9, 2016. My 11 year old niece was in tears, asking my sister, “But how could HE be elected? He’s mean. How could America elect a bully to be our next President?” Indeed.

She wasn’t the only kid to react this way. I have friends in Florida, North Dakota, Wisconsin, California, Maryland, New York, Georgia, Arizona and everywhere in between who held their children on Wednesday morning, wiping away tears of confusion and disappointment that someone who bullies others in public and on television and LIVES the example of what they are NOT supposed to be, could be elected to lead our country.

I gave myself that Wednesday (and honestly, the following Thursday and Friday, too) to grieve Hillary Clinton’s loss of the election. And then I chose happy.

My sister has a sign in her kitchen that says: Happiness is a Choice. Of course, she keeps that sign on the counter right next to the knife block. So, I guess if you can’t choose happiness, you can always choose the butcher knife. Still, it’s a choice. I chose happy.

Am I happy that Donald Trump is our President-elect? Hell, no. But I am happy to have the next four years to find someone better to run against him in 2020. (Sidetrack: Wouldn’t that be an awesome campaign slogan? JOAQUIN CASTRO FOR PRESIDENT- Because hindsight is 20/20. I digress.)

Look, I am an American Muslim of Irish descent, married to a naturalized Egyptian. We have a disabled daughter and we live under the poverty level and we don’t have health insurance because it’s not offered at my husband’s job and we fall through the cracks of ACA because our dumbass state officials in Texas decided to “show them” and not expand Medicaid….EVEN THOUGH Texans are still federally taxed. So we’re paying for Medicaid in other states and not insuring the poor in our own. I had EVERYTHING to lose in this election. But I’m choosing happy.

My faith teaches me that I must be PATIENT. I can be patient for 4  years of a Trump administration. I can USE that patient 4 years to write letters, investigate and research better qualified Democrat candidates and help to promote them. If we move NOW and are patient through the next 4 years, we can help put forth far better qualified candidates to win in 202o. Hey, you third party voters. PLEASE, do the same. If you in the Green Party and in the Libertarian Party work hard at finding a better candidate NOW….start fund-raising NOW….to get better candidates than Stein and Johnson…..get the monies needed to build up a great campaign 4 years from now…..I’ll bet you have a shot. Hell, you guys come up with someone better than the Democrat nominee and I’ll vote for him or her. But
ALL of you, Democrats, Greenies, and Libertarians: Let’s start NOW. Let’s get out in front
of whatever is coming down the 2020 Republican turnpike and make some serious changes in our government. Start finding mid-term candidates for your congressional representatives now. Put some effort in early so that you can all make our Congress more honest; more representative of US, the voters. They work for us. Make them earn their pay.

This is a test. ONLY a test. Somebody wanted a big shake up and change to the status quo. They got their wish. Let’s take their wish for change a step further and use the next 4 years to work toward true greatness. We’ll have a lot of pieces to pick up. Maybe we can build something new instead of just putting it all back together again. It’s not over. It’s a bump in the road. We can do this.

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.