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.

Advertisements

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.”

 

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.

 

 

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.

Brain Food…NOT About Zombies

ATTACK KIT COMMENT Pictures, Images and Photos
Reading is one of my all-time favorite things to do in the world. I think a dream vacation for me would involve a large comfortable couch in a large room with floor to ceiling bookcases covered in all of the books I am dying to read still.  Of course, in keeping with most of my fantasies, all 5 of my kids would be off in 100% completely safe boarding schools and the room I’m in would have 68 degree F air-conditioning setting that my husband would not be able to adjust.  (He can wear that stack of sweaters over there in the corner.)

I have this burning desire to just go to any of the major book stores and fill an empty shopping cart with one copy each of all the classics that I haven’t read, Steinbeck, Hemingway, Dickens, and throw in some Shakespeare that I haven’t yet shared with my kids. (They LOVED MacBeth and Othello.) I don’t want to
buy Mark Twain because I have a huge collection of his books that I bought at a yard sale back in the early 90’s. It was a big paper bag full of books for $5. WHAT A FIND! I also got a copy of  The Divine Comedy by Dante Alighieri, The Last Days of Pompeii by the baron Edward Bulwer-Lytto, and The Autobiography of Benjamin Franklin, and Six Famous French Novels. Those are all on yellowed paper with that slightly musty “old book” smell.  I think that the French novels book was printed in 1903. Definitely worth the $5 spent, I’d say.  Anyway, I’d also pick up copies of the more recent books by some of my favorite bloggers that I’ve been wanting to read, like Let’s Pretend This Never Happened by Jenny Lawson, Relative Insanity by Shauna Glenn, and the rest of Nuala Reilly’s Fayette series. (Of course, she has to finish the fourth book in order for me to get the full series, so, COME ON, NUALA! Get the lead out!)

Living in Alexandria, Egypt with five kids (who really AREN’T in or even likely to go to boarding schools) on a very fixed income, I don’t get to indulge in my reading addiction much. I occasionally cruise through the used book market on Nabi Daniel Street and come across some wonderful finds. (That’s where I found the Shakespeare in an English as a Foreign Language edition, aka edited beyond belief with a glossary so that my elementary kids would spark an interest.) Also, I’ve found some fascinating old hardbound books, some from authors I’d never heard of before. My favorite among them is by A.E.W. Mason, an English writer. The book I found The Dean’s Elbow is absolutely intriguing to me. It has some mystery, romance, scandalous relationships, and even historical technical information about the textile industry and perfecting dyes for fabrics.  (It was printed in 1930, so don’t go reading it if you’re looking for 50 shades of crap.) My most recent find was a new copy of Agatha Christie’s The Man in the Brown Suit. I used to read Agatha Christie in 8th grade and throughout high school. I had kind of forgotten about her. You know until one of the Inspector Poirot movies would show up on television late in the afternoon. I found a stack of brand new (never been read anyway) Agatha Christie books I grabbed the stack…but after arguing with the bookseller over price, I ended up only buying the one.  (Limited income, mind you….so I can go back and get another later. Maybe even trade back the one I just read, after the kids finish it.)

My reading “bucket list” has now become a “barrel list” and may soon turn into a “dump truck list.” But that’s okay. I know the answer would ordinarily be to order online but that gets costly when I end up paying more in customs taxes than the price of the book. It’s cool. I’m not really complaining. I look at it this way, I’m going to get that fantasy book vacation, God willing, when we move back to the U.S. My sisters both have substantial book collections that I could borrow from and the library is a fantastic place for kids and me to visit. While I kind of envy the book clubs that my friends are involved in, I think more I miss the access to public libraries. Really, guys!  Take advantage of it this summer with your kids. While at first some of them may whine a bit, “But it’s summertime! I don’t want to read!” MAKE THEM. My kids all love the library. Even the one who hates to read (mostly because he has a few learning challenges.)  Let them pick out the books…or give them a selection of some that you really dug in school that you think they may enjoy. I did this with Ismail when we were back in Texas a couple of years ago.  I chose a few authors that I thought he may enjoy and he chose How to Eat Fried Worms by Thomas Rockwell. He thoroughly enjoyed it and the exercise of reading every other page with me, awakened his hunger for reading again.

I recently bought a membership at the American Cultural Center library here in Alexandria. Once I get a few mandatory errands out of the way that involve school registrations and dental appointments, I am planning to make a regular bi-monthly trip with the kids there so that they can once again “get their read on.” I have taken a couple of them to the Alexandria Library but I was so unhappy with the policies there that I swore I’d never go back. (One library is for kids to 12 yrs, one library is for kids 12-17 yrs, and the main library is 18 and up. Parents are not permitted to enter the kids library with their kids and kids are not permitted with their parents into the adult library. Also they have a sign that states the library is not responsible for kids while not with their parents?????? WTH????)

So I’m hoping that my children will bring their English reading levels up to as high as they are in Arabic this Summer. It’s all about the brain-food. And no. I’m STILL not talking about zombies!