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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Alternators, Emissions, and Rainstorms-OHMY!

carsINrain

This is the view from my front porch today…or it WOULD BE if the Mazda weren’t at the mechanic’s garage right now.  We are currently a one-car family circus. This means that I am adding driving my husband to and from work to my usual chauffeur duties.  That’s not so bad, really.  I get to spend a little alone time with him on the way to work and he’ll hold my hand and sort of grunt in agreement as I chatter all the way.  He’s not a morning person.

The Mazda’s alternator is in need of repair. The van can’t seem to pass inspection due to an emissions issue and, as our regular type of luck runs, we’re still one year short of the emissions waiver. DAMMITMAN!  So, we’re working with what runs for now until the one that doesn’t is repaired and then we’ll switch vehicles for a whole new course of driving around in one vehicle while the other is repaired.

I am all about buying used cars and paying cash so that we don’t end up with car payments.  Some would say that considering the automotive repair issues we are facing now, that I should rethink my philosophy of used cars.  To them I say, “Au contraire, mon frère!”  We bought that Chevy van 3 years ago for $2000.  We’ve put about 30k miles on it and maybe $1000 under the hood.  Truthfully, that’s not bad for a 19 year old vehicle.  The Mazda was a gift from my brother, who heard that my little Metro’s transmission and clutch had bit the proverbial dust.  He drove it up here from Austin, signed the title over to me, took a 3-hour nap on my couch and then had me drop him off at the bus depot so he could make it home to work that night. What an awesome guy!  I’ve driven that thing at least 5k miles since February and this is the first time it’s needed to be repaired.

That’s the thing about vehicles, you know?  They eventually need to be repaired.  And many people would be more secure in driving a new car that is still under warranty, etc. But for us, justifying that car note also comes with justifying full coverage insurance which, with 2 teenage drivers, we just cannot afford.  So we’ll keep our secondhand cars and just ride the automotive repair waves this month.  It is what it is.  At least our second vehicle is not a bicycle.

 

Stress in My Pressure Cooker Head

I was planning on writing today about how my “to-do lists” have become so long and intense that my body has started to fall apart. But just looking at that title has given me the start of an anxiety attack and my chest hurts now and my joints are throbbing and I just realized that I’m already late to go pick up one of the kids from Summer school.

So, perhaps I’ll write about this later under some soothing, aromatherapy inspired title post so that I won’t freak out about how even AFTER school lets out I can’t catch a freaking break.

the end.

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.

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.”

 

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.

 

Supposed To vs Actually

We’re supposed to go on a road trip today. We’re supposed to be stuffing the entire overbooked with practical shit summer into one day of family fun not too far from home. My kids are supposed to be up and packing picnics, getting softball equipment, and bags of ice ready and into the back of the van (the same van that my husband just had repaired so that we could make this trip WITH air conditioning as opposed to the usual sweat-logged journeys of the past.) I’m supposed to be gassing up said van and using up all my “fuel points” to get the cheapest gas around and jumping up and down like an idiot that’s one a $50 scratch ticket. (Thank you, Kroger Plus card.)

What’s actually happening is my husband is in the backyard painting the cement slab he laid for the kids to play basketball on, I’m checking email (and now blogging quickly as my jeans are still in the dryer,) and all 5 teens are still asleep.

I vote we ditch the kids and show them pictures of all the fun we had while they slept once we get back.

 

Never-Ending To-Do Lists

We both had To-Do lists with at least 9 tasks so we cut our phone call short (half an hour as opposed to an hour.) My sister suggested I call her in a few hours to see which of us completed more on our lists. Mine was uber-long today since it’s the last day of Ramadan and I usually spend most of today cleaning house and making cookies for tomorrow’s feast. Except, well…I’m OLD now.

Yeah, I’m no Spring chicken anymore and this whole washing down walls and scrubbing area rugs and beating dust out of the furniture and scrubbing the tiles and shutters routine is a thing of the past, Baby. I did this every holiday for YEARS. But this year I’ve discovered a couple of things.

  1. Delegation of Authority/Responsibility (AKA Make Your Kids Do It)
    I assigned the oldest to sweep the house. The younger girl is mopping. The second son I had to take to work, so he dodged a housework bullet. The youngest boy is about to cry because I’m not only going to make him clean the small bathroom, but I’m going to make him pull the trap from under the sink and clean all the effing hair out of the drain. The older girl is going to be doing her laundry plus towels.
  2. I’m Nearly 48 and No Longer Have Any Fucks to Give
    What this means is that I just do not give a rat’s fat, furry ass if someone thinks I’m a lousy housekeeper anymore; including my family. I keep up with the dishes, cooking, tidying, and I’ll wipe the dust off the walls that the ceiling fan tosses up there, but only about once every 6-13 months and only if I feel like it. I’m not saying we live in filth and squalor and I’m proud. I’m saying that I don’t deep clean on a regular basis but I make sure we take the trash out and don’t have vermin of any kind.
  3. People Are My Priority, and by People, I mean My Husband and Kids
    I am classified as a “Soccer Mom” (although none of my kids plays soccer regularly) and I could define my 3-cylinder Metro as my “home away from home.” I shuttle two of my kids to and from their part time jobs, drag my daughter and her friends home from softball practice and to and from home games. I am a board member for a non-profit organization and I run a lot of errands for fundraising events. I do the shopping, doctors appointments, and take kids to and from school and college. I am currently teaching two of my sons how to drive. One must have studied by way of joy-riding in his friends cars, because it’s far too easy. The other one requires Xanax before and after each lesson….for me, I mean. But all this shit eats up most of my day before I have to race home to meet the special needs kid’s school bus at 3 pm and then start cooking some amazing home-cooked gourmet meal that they’ll snarf down in 15 minutes before belching in my face and announcing, “I need to bring cupcakes to a class party for first period tomorrow.”

So, when my sister suggested we compare notes in a few hours, I knew I’d win. Because my kids are older and I’m far bossier. So I took the 17 year old to work, defrosted 2 whole chickens, picked up a few items at the Mexican supermarket near the house, disconnected the Daytime Running Lights on my Metro because they weren’t shutting off AT ALL after shutting off the engine and removing the key, tasked the 21 year old to sweep the entire house, the 16 year old to mop the entire house, pushed the 19 year old into the bathroom to take a shower. The 15 year old thinks he’s avoided it all….He’s so wrong. Hairball, here he comes. Add to this that I’ve just completed pre-enrollment paperwork online for all 4 high school students and two that are participating in athletics this year, contacted the Recreation Softball department and registered my daughter for Fall Ball, and outlined a joint fundraising proposal that I want to sent out to another non-profit, I’m HANDS DOWN the winner.

Today, anyway.

Tomorrow could hold an even bigger list for us both and she has energy, only 2 kids, is 5 years younger than I am, and does yoga. I could spend all day in bed tomorrow recuperating from delegating chores from today’s never-ending to-do list. Whatever.

 

 

 

 

Triggers

I have seen the Stanford yearbook photo of the convicted rapist whose father feels he is being punished too severely for “20 minutes of action” with an unconscious, young woman behind a dumpster. My stomach turns and I fight the nausea that comes in waves along with the memories of fear and disbelief and shock and horror and indescribable panic that I experienced during an attempted rape. It all happened so fast…and in front of his 1 year old daughter who I had come to babysit. She was on the couch and I was sitting on the floor playing solitaire, waiting for him to leave. His girlfriend’s shift started about two hours before his and I had agreed to watch the baby for a few hours each night to help her out. I had known them both for several years. I distinctly remember sitting strategically on the floor in front of the couch so that if the baby decided to get down I could catch her with my body. I remember that I was wearing jeans and a grubby t-shirt because I didn’t have time to go to the laundromat. I was barefoot because it was hot that day and I always took my sandals off at the door. I was bored and wanted to be at my own apartment across the street where my then husband was watching television. But I had agreed to stay with the baby at their place. And I remember thinking, “Why hasn’t he left yet? He’s going to be late for work and then the phone calls are going to start.” You see, he was on house arrest and had a specific number of minutes to get to his job and clock in or his ankle monitor would go off. He had been arrested for robbery. And he wasn’t violent. And I knew him. So I thought I was safe. And I felt him staring at my back. My back that was covered with a baggie t-shirt. And how he managed to jerk my jeans and underpants off and throw me to the floor with only one hand holding my ankles together and over my head while I was pinned to the floor with his body weight was unbelievable. I am a strong woman. I lifted weights in high school and college. I ran track and cross country and have very powerful legs. I forced my feet onto his chest and started to force him off of me. His face was replaced by that of a menacing monster and his fist that was twice the size of mine threatened to break my face if I kicked him. I felt pure fear for the first time that day. My mind raced to his daughter who was sitting on the couch watching this assault unfold in front of her innocent eyes and I started to cry. And I managed to choke out, “I cannot believe you would rape me in front of her” and then the tip of his penis that was already touching my labia was gone. And he pulled up his pants and walked into the back of the apartment. I threw on my underpants and jeans, grabbed the baby  and ran to my apartment across the street. I called her mother from my house and told her that she should call me before she leaves work so that I could bring the baby back home as she got home.  She was upset that I told her I couldn’t watch her anymore. I am sure she felt betrayed by me; leaving her in the lurch having to take off work to find short-notice babysitting that she could afford. And I never told her. And I never told my husband. And I never told a soul…because I knew that my past one-night-stand with the baby’s father that had happened when I was engaged to be married would come out and then my friend would be hurt and my husband would be hurt and I would be labeled a whore and what difference did it make since he was going to go off to prison soon anyway?

It mattered. I lost my friend anyway. I lost my husband anyway. True,  not for the reasons I had imagined, but they were gone nonetheless. And I still find myself afraid in parking garages, storage facilities, elevators with just one male rider. I doubt my ability to make good choices, whether or not turning my back to him to play cards on the floor was an invitation. This was 26 years ago. And I still panic over it. And I wasn’t “actually raped.” And though there was no penetration, I still felt violated and terrified and dirty and ashamed. And in my effort to protect the feelings of others in my life, I never told anyone and ended up carrying this violation, terror and dirt and shame in my soul and mind anyway and it is the reason for my self-doubt on so many occasions.

And I can’t help thinking that if all the Stanford rapist gets is 3-6 months in a county jail, then maybe he’ll end up on the other end of that equation at least once. He won’t make the connection that he is experiencing what she did. He’ll blame her for it. And the Swedes. And the system and probably even the judge who did him the favor of slapping his wrist instead of teaching him the accountability he so desperately needs to be taught. And no one will be any wiser or safer or better for it.