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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Today Should be an International Holiday

So, the solar eclipse of 2017 here in North Texas sort of resembled a greenish-brown pre-tornado overcast sky.  I was not impressed. Of course, I would have been had I lived in Oregon.  But you know.  I don’t.  I live near Six Flags and Globe Life Park where the Texas Rangers play…oh, and that stupid-looking stadium that looks like the Dallas Cowboy’s Gargantuan White Nipple that can be seen on the horizon from 12-miles away.

The coolest thing about today has NOTHING to do with making solar glasses out of cereal boxes.  MY HIGH SCHOOLERS WENT BACK TO SCHOOL TODAY!!!  I’m enjoying the quiet of my 3 college-age kids and my husband.  I caught up on laundry, made my bed, downloaded some apps onto my computer and took care of some health care stuff online for several of us.  This is HUGE, y’all.  I was only interrupted once to help my husband trim his beard…and then he decided to just shave it all off so I was dismissed back to my solitude of peace, with no having to break up fights about whose turn it is to play on the laptop. WOOOOHOOOOO!

The first day of school should literally be an International Holiday.  And all mom’s who show up at any diner or coffee shop or convenience store with a stupid grin and looking slightly frazzled from getting those students off to school on that first day, should receive a big cup of coffee, tea, or whatever they want for free.

I’m going to live it up for the next hour before they lumber off the bus and raise the decibel levels up in here.  It’s party time.

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.

Ramadan 1438 (2017)

Well, in sticking with my usual Ramadan traditions, breakfast was LATE on the first night this year, too. I had big plans, people. BIG plans. We had the dates soaking in milk for about 13 hours. We had freshly made mango juice. We had hummous and baba ghanouj and I even remembered to have my husband bring bread home with him…because I always forget it. We had the coffee pot set up and ready to brew. I had found a recipe for making spiral-cut parmesan baked potatoes and had them ready to go. I had pulled the ribeyes out of the freezer before noon to thaw and since it was 40 billion degrees outside, I decided we’d grill them in the oven instead of any of that charcoal grill nonsense. And I made Brussels sprouts. I should have gone with the charcoal grill.

The stupid meat would not freaking cook. They’re steaks. I’ve made them at least 4000 times in my life time. WHY? What gives? The physics in my oven just decided to go on strike? AUGH! I don’t know what was going on there….but it was terrible. We had all the sides and juices and salads. But no meat until 9:00 when they finally finished cooking. And they were terrible. I was so sad that, of all the traditions, being late with dinner on the first night of Ramadan was the one that I managed to keep. *sigh* Oh, well.

Today I took the meat out of the freezer at 10 a.m. I’m going to start cooking at 3 p.m. And all I’ll have left 40 minutes or so before the sundown is to make a pot of rice and to turn the coffeepot on. Now if I could just remember this lesson on the first night of Ramadan 1439, I’ll be in good shape.

Ramadan Mubarak.

رمضان مبارك

 

Welcome to the Club

My sister called me this morning and asked me to lie to her. I don’t like to lie. I’m not very good at it and I honestly find the truth to be much more incredible, hilarious, and easier to keep up with. But she begged. So I did.

I told her that my husband and I were living the dream in our home with five kids (ages 16, 17, 18, 20, and 21) decorated with hearts, butterflies, and rainbows and that all that stuff we’d heard about how difficult these years would be is just a big box of hot air bought and paid for by pharmaceutical companies pushing their Xanax dreams. I told her that her two lovely early teens would be mature, pleasant, helpful, drama-free, productive members of society all throughout their teen years, just like mine have been and continue to be. I offered her my Groupon savings for unicorn rides at the next Mother-of-the-Year Awards Gala event.

And then I told her that they may want to consider upgrading that wine cellar they have and I’d be her designated driver if she needed to restock. Or I could load all the 12-step program meeting locations into her iPhone next time she came by here.

The truth is Dr. David Walsh wasn’t even remotely exaggerating when he wrote about the whole “teenage brain” thing. They are incapable of making rational and mature decisions. They’re just not equipped to make them. And it requires a hella lot of patience to stand by and point out why the choices they’re making are dumb or not well-thought-out or insane or whatever adjective you want to stick in here.

So, when my sister called and asked me to lie to her about this inevitable phase in her childrearing life, I did. I laughed all the way through it. But I did it because she just needed a little 30-second break from reality. Before hanging up, she said for me to tell my husband hi. He didn’t miss a beat when he replied, “Hi back. And welcome to the club.”

 

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!)

 

 

 

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.

 

Judging Books by Covers

The following was written by my friend, Joli Crow. (It’s shared with her permission.) And it speaks volumes as to the body-shaming and judging and the ridiculous lack of manners that seems to be rampant any more. I read this this morning on her Facebook status and the more I read, the more my heart broke for her. I honestly don’t know what I would have done were I to have been in her place. I would like to say that I’d have called him out on it out loud. I’ve done this in defending my daughter during her autistic meltdowns and people are staring or making rude remarks. But I don’t know that I would if I were the target of mean comments and bug-eyed glares.

Joli, you are an amazing woman; a survivor. Keep strong. ~N

****

Dear Mr. Chiseled Jaw,

I heard you this morning. Standing behind me, on your phone. I heard you tell the person on the other end that you can’t stand fat people. I heard you tell them you thought something was wrong with me, because you can see the scars on my arms and chest. I heard you tell them that “a little hard work and some plastic surgery and she MIGHT be a 5 someday.” And the comments about my hair. And the laughing.

A few years, a few months, hell, even a few weeks ago, I would have broken and faltered under your harsh words and judging gaze. I would have gone home, curled up under my blanket, and cried myself to sleep. I would have started comfort eating, or hide myself in a book, or done ANYTHING I could to pretend I never heard you.

But I’m going to tell you something. Are you listening? Probably not, but I’ll tell you anyway. This “fat” body? Carried life inside it. It protected a tiny human, one who now could pick your ass up and toss you aside without a second thought.
This “fat” body? You act like it is unlovable. Yet not only do I have an amazing partner who loves it and all its curves, but I have two children who love to cuddle it; who think my softness is a source of comfort. It’s a body people are not afraid to touch, to hug. It’s a body that has lived.
My scars? The ones you said made me look like a junkie or an AIDS victim? I never chose them. They chose me. Each scar was carefully applied with hate, malice, and savagery. Each BATTLE SCAR is a reminder of each day I have survived; each war I have won. Each scar is a reminder of the victories, both large and small, that I have earned in my life.
I may not be YOUR perfect 10. But I know my worth. I know who I am. I know and love each of my demons. I have survived and I have won!

Today, you could have hurt me. You could have undone all the hard work I have put myself through to love myself more. But you’re not worth it. You are no one to me and I don’t have to answer to you or your opinions of me. Because at the end of the day, are you the one putting food on my table, clothing my children, paying my bills, loving me and each of my scars and every pound of me? Are you the one jumping to my side when I need a friend? Are you the one I turn to for comfort?

NO.

So, have a nice day. Enjoy your life and learn to be a little less of an asshole.

K? Thanks, bye!

From,

The Woman who no longer gives a damn what you think.

PS. I will admit a certain satisfaction when you were refused service because of your statements. Gotta love small towns!

Gearing Up for Starry Night Prom 2017

2016-05-23 16.58.40

See these bright smiles and happy faces in this photograph? They belong to some of the participants in the Starry Night Prom 2016. Starry Night Prom is a registered Non-Profit 501 (C) (3) organization that annually holds an all expense paid prom for Arlington ISD High School students with significant disabilities. Starry Night Prom is heading into its tenth year of hosting proms for these amazing kids and we want Starry Night Prom 2017 to be better than ever.

Throwing a prom at no cost for the students and their required chaperone requires donations, both money and in-kind. So the Starry Night Prom Vice-President of Donations has decided to start early this year. And our first fundraising event is already set up! With the help of the amazing, tasteful, and trendy: Charming Charlie (located in the Arlington Highlands.)

Charming Charlie is already having an awesome sale this entire Labor Day weekend. Why not do your shopping the first night of their sale to take advantage of their discount prices, fabulous selection, AND help a worthy cause? Think of the great Christmas gifts you can score ahead of the crowds! And don’t you think it’s time you got a new purse for yourself? Charming Charlie has bling, accessories, clothes, shoes, handbags, scarves and more.

How does your shopping help Starry Night Prom? It’s easy. If you show up this Friday, September 2, 2016 between 5:30 p.m. and 9:00 p.m. and shop, then you mention, “I want to support Starry Night Prom,” to the associate at check out. The associate will key in our special Starry Night Prom Chic Charity Event code into the register and then Charming Charlie will donate 10% of your total purchase price to Starry Night Prom. That’s it.

So, when and where and how is this again?

WHEN:          Friday, September 2, 2016
TIME:             From 5:30 p.m. until 9:00 p.m.
WHERE:        Charming Charlie located at 3901 Arlington Highlands Blvd,

                         Suite 101

                        Arlington, TX 76018

HOW:            Just go to Charming Charlie at the address above. Buy from their entire selection of amazing products and mention STARRY NIGHT PROM to the associate at check out. PLEASE be sure to mention STARRY NIGHT PROM at the beginning of your check out process to ensure that they code the transaction properly so that STARRY NIGHT PROM will receive a donation in the amount of 10% of your total sale.

We at Starry Night Prom thank you in advance for coming out to support our worthy cause. Helping to give an Arlington ISD high school student with significant disabilities the opportunity to enjoy the Prom experience that they might not have been able to have is definitely a reason to smile. Don’t believe it? The proof is in those smiles in the photo above.