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.

 

Welcome Home, Hero. Rest in Peace.

This was not the first military funeral I had attended.  It was the first time I’d been to any funeral that took place 76 years after the deceased had died.  This young man, a kid the same age as my third of five children, has finally made it home to be put to rest with his family in a hero’s ceremony.  Seaman First Class George Anderson Coke, Jr. came home to Arlington today for the first time since he left for boot camp back in 1941.

My friend, Leslie Dorn Barton, is George Coke’s second cousin once or twice removed.  I’m still unclear on all that genealogy stuff.  While I’d like to be able to trace back my family tree, I’m quite unorganized and tend to think circularly rather than in clear straight lines.  Besides, I’ve got aunts and cousins on both sides of my tree who really dig that sort of thing and they actually journal it all. Anyway, Leslie is one of the Special Education teachers who taught my daughter at Sam Houston High School. We became friends over the last couple of years. So naturally, when she mentioned that this funeral was happening today, I told her I’d come.

It’s been hotter than ever all week and I was so relieved when the thunderstorms hit our city last night and it rained until the wee hours this morning.  I donned my black abaya and a gray and black scarf and then headed over to the First United Methodist Church and tried to “blend in” with the Arlington locals.  I know.  I didn’t. The sole Muslim in a sea of mostly older, white, Christian faces.

I listened to the history of George Coke, Jr., son of George Coke, Sr., who was the Chief of Police in Arlington back in the 1920s.  I learned that of the 3,500 American casualties that day in Pearl Harbor, that Arlington lost 48 souls.  My mind wandered, as is the norm during funerals.  Everyone in some way or another is reminded of their own immortality at a funeral.  With military funerals, you are also reminded of all of your family members and friends who also served in the armed forces.  I felt a few tears escape today as I remembered friends who were killed in foreign wars.  I felt a few more tears escape as I offered prayers of thanks and gratitude for those family and friends who returned safely home.

I followed the funeral procession to Parkdale Cemetary. We were escorted by members of the United States Navy and a large number of the Arlington Police Department.  I watched as the sailors, now pallbearers, respectfully carried the remains of their comrade who fell in the line of duty more than half a century before any of them were born.  And the firing of the three volleys, though I knew they were coming, still caught me off guard and those tears of relief that most of my loved ones returned to me fell from my eyes as a silent salute to Seaman Coke and all of the thousands who didn’t.

My heart stirred as I watched the slow and deliberate movements of the sailors folding the flag and the hand off of that folded flag followed by the final salute from Seaman to Non-Commissioned Officer to Officer to Rear Admiral and finally to George Coke, Jr.’s family members.  The spent shell casings from the three volleys, symbolizing duty, honor, and country, were then placed into the hand of the young descendant of Seaman Coke.

A cool breeze gently blew across my face, air-drying the silent tears and leaving my cheeks a little bit sticky.  I hugged Leslie and shook hands with her son, aunt, and mother.  I looked back to see the final resting place of Seaman Coke, under the Live Oak and the Crepe Myrtle trees, beside his mother and father.  Welcome home, hero.  Rest in peace.

 

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.”

 

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.

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.