Why I Suck at Life and Other Tales

The I'm-in-a-shitty-mood-and-have-no-pic-for-you pic. Deal with it, please.

So I have to be the worst mother in the world right now. We try and try to monitor what Evan sees/ does/ hears. We cannot control all of it and realize that in just a few short years, he will be a teenager and his peers will likely have more influence on him than either of us. So we don’t get nutty about it. Some of the stuff, he is going to hear, and I would rather it be here with us so I can correct him. But that didn’t prepare me for tonight. It was bedtime, and he was angry that we wouldn’t let him stay up all night, despite the fact that he has no school tomorrow. He was storming down to his room, dressed in his flannel pj bottoms and an old tee, and I heard him say to his father, “Suck my——“. I didn’t sensor that. He did it. He stopped short of saying what would have had me reeling. But I was still shocked/ disgusted/ angry as hell. Where in the hell did he hear such talk? And even though he didn’t finish the sentence, does it really matter what the end word was to be at this point? How could that possibly have ended in a way that would have been acceptable? I’ll answer that one for you: it couldn’t have. So now Evan is massively grounded. And the computer/ tv/ dvd’s/ cd’s/ mp3 player are all on lockdown until I either find the offending media or he rats out the punk at school who talks like that. (Disclaimer: While I sling the f-bomb on here all of the time, I don’t speak that way in front of my children, ever. So don’t even think it.)

There is a problem with my laptop. Yeah, the one I bought in March. Anyhow, the mouse buttons don’t work, and while I can use an external mouse for the time being, it is driving me crazy to do so. So I googled the tech support number for Dell. And this link popped up with the number, the Dell logo, and more. I called the number and got an Indian guy–not racist, Mr. Internet Troll/ William Wallce/ Braveheart Motherfucker–just an observation. And he seemed polite and helpful. And he wanted remote access to my PC so he could check it out. Which I granted. He asked for my home number, just in case we got disconnected, which I gave. I gave him the cell number too, since he requested it. And then the convo started to go downhill from there as he started pulling up Wikipedia pages on my desktop about malware that comes from social networking sites. And he did some scan that reports that I have like a gajillion viruses–in truth, I scanned my computer after all was said and done, and I found no threats other than the ones he installed. Anyhow, he started demanding hundreds of dollars from my credit card, blah blah blah. Really, the problem is with the damned mouse buttons, not the actual computer. And I have antivirus protection. I didn’t need anything he was slinging. So I aborted the remote access, logged off and hung up simultaneously. The bastard called back. Again and again, to both numbers. And I instantly felt like the world’s biggest idiot. I called the guy. I gave him my numbers, and I gave him access to my computer. And when it was done, my antivirrus automatically fired up and detected two threats that were cleaned off of my computer. I feel so stupid. What is wrong with these people? I mean, really? You’re going to pose as Dell Tech Support now, Cyber Assholes?

Yeah, failure of epic proportions in other areas of my life right now, too. This was the week we were to do our rounds at the big Children’s NICU in preparation for the opening of ours. I was among the 10 therapists who made the cut, and so I was to go. So here’s what happened: I was off for 4 days. I kind of ran ragged though, as I was finishing up classes, getting new furniture and working on the house. Despite wearing myself out during those days, I still couldn’t sleep at night due to my night shift schedule. So I would be up all night and try to stay up all day the next day in the hope that I could spend my days off with the boys instead of sleeping while they are awake. And again, I would be up all night that night. It sucked, and before I knew it, the days off were a thing of the past. I had two days of work, my standard night shifts. Then I had one day off. Though it wasn’t reall a whole day. I got home at 8AM on Sunday morning and had to be at Children’s at 7AM on Monday. So again, no sleep. The same for Monday night and Tuesday night. Needless to say, after sleeping about 6 hours in 10 days or so, I started to feel under the weather. I tried to fight it off. Wednesday morning, when I woke from my whopping 30 minute nap to get ready to leave, I knew I wasn’t going anywhere. Fever. Chills. Aches. I even puked a couple of times for good measure. And why was I breathing like one of my emphasematous patients? I had no choice but to call in. The last thing a 24-week preemie needs is to be around my sick ass. And so I slept. I slept like the dead. Until John woke me because I was so freaking hot and breathing so strangely that he was really worried. And off to the doctor I went. Yeah. I have fucking pneumonia. So now I am on steroids, antibiotics, bronchodilators. I’m starting to feel a little better, but only slightly. To put it into perspective: before, I felt like I had been hit by a train. Now it feels more like a Mack truck did me in.  I have been off since Wednesday, and now am off until Tuesday night. Shit.

So there you have it. I truly do suck. I’m hoping that tomorrow, if the third day of antibiotics and steroids continues making the same amount of improvement the first two days made, I may be able to leave the house long enough to get some lunch or something. Or maybe some very quick retail therapy before I wear out. Who knows? I’ll probably be dead by then with the way this week has gone.

PS- Zachary–sweet innocent Zachy-Poo–learned something new. He learned to stick his cute little finger straight up his cute little nose. Holy shit. And I was so grossed out that my reaction may have scarred himfor life. Is his brother’s Pig Stage rubbing off on him? No. Please, God, noooooooooo.

Sad

There was this friend of mine, a coworker. We used to hang out together at work before I became pregnant. She was a labor & delivery nurse, and it never failed that when I was admitted to the hospital, she would be taking care of me. She used to jokingly act angry that I was supposed to be an easy patient, yet I always ended up on a mag sulfate drip or had contractions that freaked her out. Or I would have to take a ride across the river. I was far from easy, yet she was always there. I had to have worn her out, yet she never made me feel as such.

She was the one who walked in on me, sitting on a garbage can in the bathroom of my hospital room while John helped me wash. I had been on a mag drip for days, and thus had strict bedrest orders. This meant I couldn’t even take showers and, due to the drugs, I didn’t even have the strength to try and clean myself up in the bed. I didn’t even feel human. It was somewhere toward the end. And John showed up with an enormous bag of bath products and helped me break orders. She caught us, but one look at my tear-streaked face, and she didn’t say a word. She knew what I had gone through, and just bowed her head and closed the door.

She was working the night after Zach’s birth. She gave him his first real bath after he got out of the NICU.

The environment at work changed, and I only see her occasionally in passing. I found out today, through Facebook, that she is leaving the hospital for bigger and better things.

I never got to tell her thank you. Well, not adequately anyway. But how can I ever say anything that would be adequate when I see her face and her work when I look at my youngest son?

Best Wishes, C. You’ll be missed.

The President Drove By My House and All I Got Was This Lousy Traffic Jam.

 

"We. Are on. A mission. To destroy. Ths bitch's. Plans for the day."

 

President Obama was in Cincinnati yesterday.

Ummmm, yeah. He drove (or rather was driven) right by my house.

How interesting. How exciting.

What a pain in the ass.

If I had the time to keep up with current events, I would have known this was coming. But I don’t, so I didn’t.

As I posted previously, we were on a mission yesterday. Upon picking Evan up from school, we had a million and one places to go in order to be on-time to an appointment to get the boys’ photos taken at a local park. It all started with John going down the hill to get gas. And then we couldn’t get back up the hill. They had blocked traffic. We thought maybe there had been an accident, so we turned down a side street to go a different route. And got stuck again. We were wondering what the hell was going on, if Armageddon had happened without out knowledge. It was like the entire area was on lockdown. Turns out it really was. All because Obama’s caravan, or whatever it is, went down I-75 right by our house.

I heard from a friend that he was scheduled to appear in order to speak about the Brent Spence Bridge, and how it is so important to this area. If you don’t know, this bridge is a double-decker I-75/ I-71 bridge across the Ohio River. It is an artery to Cincinnati/ Northern Kentucky. We travel it a gazillion times a week. Without it, this region of the country would shut down. Without it, nobody would be able to travel the interstate. It’s old as dirt, and Obama says it needs to be replaced. And he is proposing that money be spent doing so.

In order to get his point across, he decided to travel to Cincinnati to speak on the importance of this bridge. What would we do without it, after all? Oh, the irony!

His way of conveying the importance of this bridge for the people of this area? To shut down the entire area by making a brief appearance and shutting down the bridge. We couldn’t go anywhere. We couldn’t even give up, because we couldn’t even get back to our own friggin’ house. They had our road blocked. I even tried to call a friend to see if she had any alternate routes in mind that I had not thought of, as I had two hungry kids in the car. Well, guess what I learned! I learned that when the president comes through, they disable cell phones, too. Only for the brief time that he is in the immediate area, but nonetheless…For about 10 minutes, our phones were in “emergency only” mode. No data, no cell service. I was seriously getting pissed. I paid the phone bill, after all. Why didn’t I have service? This baffled me, but John, of a military background, reminded me that there are crazies out there who actually arm and detonate bombs with cell phones these days. Obviously that isn’t us, but I got it after he explained it to me.

But really? To speak on the importance of our roads and bridges to this area, you’re going to shutdown the area? We know it’s important, now please let us get on with our day. We have shit to do and you are keeping us from doing it. I was starting to daydream from the passenger seat of me barrelling through the barricade set up by the Secret Service to get to my house, of seeing my car on CNN with me behind the wheel, on a mission to get my kids some food so they could get to their appointment. “Deranged Lady in Orange Dodge Disregards Roadblock, States Children Had Photog Appointment”. Just when I was about to lose it, some man in a black sport jacket and dark sunglasses removed the orange cones and we made it through.

I cannot make this shit up.

The Brent Spence. See how important it is? Now let me through, bitches.

What’s Wrong? Haven’t You Ever Seen a Toddler Before?

We had a crazy afternoon yesterday. We picked Evan up from school, loaded Zach into the car, and off we went. We had an appointment in less than 2 hours to meet a coworker who is an amateur photographer for photos of the boys, but first we had some stuff to do. Evan needed some new shoes that weren’t gym shoes, as he tried on his pair of brown leather oxfords that morning to discover that they were too small. Both boys needed haircuts. We were on a mission. But we hit a crazy patch of gridlock. John hastily turned around to discover that the main road leading to our street was blocked. We thought there was an accident, so we tried another route. And another. (I’ll post about the reason here in a minute.) We wasted 45 minutes of our 2 hours just trying to get someplace. One of the plans was to stop and get the boys something quick to eat, but before we knew it, it was time to meet the coworker. We let Zach nibble on some crackles and sip some juice until we could feed him, about an hour later. Needless to say, by the time we were finished with the photos, he was hungry. We all were. I just wanted to get takeout and go home. John had the idea of stopping at a Frisch’s right down the street from us.

Frisch’s. I like their food, but it isn’t five-star or anything. It is ultimately a safe option for kids. It is the type of restaurant that hands out coloring sheets and crayons with their kids’ menus. And gives crazy straws with the kids’ drinks. I, of course, take for granted that everyone knows what Frisch’s is, but I know that they are called different things throughout the country. Having lived in Madisonville, Kentucky for 5 years, I know they didn’t have them down there in that area. If you have a Shoney’s in your neighborhood, or even have ever been to a Friendly’s, than it is about the same. We eat there once every few months or so. But the reality of my schedule is that we eat out in general, allthefuckingtime. I know the drill. I know to keep Zach occupied until we get our food. I know to order appetizers if that is an option, just to get him started on something. He is very impatient when it comes to food.

Well, we order right away. We know what we usually get. The server brings our drinks: milk for Zachy. I had a sippy cup that he likes right there, so I was immediately able to give him his milk in his favorite cup. We asked our server for a cuple of crackers while we waited for food. Zach would eat a cracker, and upon finishing it, would fuss to let us know he was ready for another. When he wanted a drink, he would fuss and point at the cup to let us know. There was a guy sitting alone in the booth directly behind us, reading his paper quietly. He would look up when Zach would fuss, but I think he saw what was going on and was patient with us. All we had to do was appease him until the food came. Picture being that small and not really understanding what is going on. Knowing you are hungry and seeing everyone around you with plates of food, and you have none. Given the circumstances, I thought he was doing really well. And then the server came back to the table to confess that she lost our order. She was apologetic, but this meant we had to keep Zachy occupied just a little longer. In total, it was probably about 15 minutes of intermittent fussiness. Not full-blown crying or a tantrum. Fussiness.

That’s when it happened. Across the section, on the other side of the salad bar, was this older couple. He had on some kind of pub t-shirt. Her bleach-clond hair was teased to the limit. They were eating salad from the salad bar. Everytime Zach would make the slightest noise, she would shoot us dirty looks. This even included a time when he giggled at a funny face John made. And she very loudly requested their server to make us leave “since they cannot control their child”, she said.

Woah. Really, was she talking about us??? My kids???

You have got to be kidding me, right? Have you never seen a toddler? HAVE YOU NO HEART? Did you not notice that the child was quiet as a mouse when the food actually came? He was fucking hungry, lady.

And then, as if that wasn’t bad enough, they demanded to see a manager, demanded to be moved to another table. John was just about to request to move to the table beside them, just to be a jerk, and said he would have had I not been with him.

I am not ghetto. I know how to behave myself. I have no history with law-enforcement. Especially when my family is sitting there. I am a healthcare professional in this area. I cannot behave in certain ways. Lucky for her. Because what I wanted to do was loudly embarrass her. To tell her that she should expect children to be present at a fucking Frisch’s. And that even the best-behaved toddlers can make a little noise. They even make messes, which I always clean up. And if one has a problem with this, perhaps one should choose to dine somewhere that doesn’t offer up fucking crazy straws, crayons, and high chairs. We live in an upper-middleto-upper class area. There are plenty of those places. I know there are. I know because, while we would love to eat at them, they aren’t kid-friendly and the patrons there don’t want to hear a toddler, so we DON’T GO TO THEM!  We have manners. We respect others’ wishes to have a meal in peace and select our dining establishments with them in mind.

Furthermore…

It wasn’t even like my children were acting badly. Zach was a bit fussy. Trust me, I know bad restaurant behavior. There was about a 2-3 year stretch where we didn’t eat in anywhere with Evan because his behavior was so atrocious in restaurants, even the family-friendly ones. So we didn’t go until he learned to behave. Instead, we would order takeout. If you have ever been the parent of a child with behavior issues, you know that their misbehavior is mortifying to the parent. This is made even worse by people with no compassion, who act as if they have never seen a child act up. Even so, when Evan would act up, we would always flag down our server and get the stuff to go. After so many times of doing that, we gave up on going out to eat as a family until we got a grip on the way Evan acted. So I know. I really do.

But this is Zachy we are talking about. Sweet, 16-month-old Zachary. The BABY. The one who greets everybody—and I mean everybody–with the biggest smile imaginable. The sweetheart. The adorable one. And he was hungry. Cut him some slack, would ya? Usually, the only problem with Zach in a restaurant is the mess he makes. Remember my tales of cleaning the stuff off of the floor? And over-tipping. If anything, the people at the tables around us play with him.

I am still pissed about that nasty, horrible woman. She must lead a miserable life. If  she has ever had children, she was probably the type to beat them until they were afraid to make a peep. I won’t do that to my kids so you can eat a fucking cheeseburger without hearing a toddler fuss a bit. And I would have given anything for them to leave around the time we did. I would have loved nothing more than to be able to give her a verbal lashing in the parking lot, when we weren’t in the restaurant.

People kill me.

This House

We moved into this house when being pregnant with Zach was still new to me. I hadn’t started having many complications yet, and thus no bedrest. But being the pessismist that I was, I knew what was coming and wanted to find something as cheap as possible. Our old place, though huge and roomy enough, was more expensive in every way: rent was $300 more monthly. It was an old rehabbed mansion, so the electric bills were enormous. I was paying it–and I am talking between $800 and $1000 per month–only to discover, upon moving out, that we were supplying all of the common areas for the multi-unit building.

I found this house. Smaller, but much, much cheaper. It needed work. Lots of work. The owner told me to do whatever I needed to make it acceptable for us, that he hadn’t had any time to do so on his own. He would take whatever improvements we made off of our rent. Then bedrest happened, and we never got a chance to do anything. And then we had Zach, and I had to learn to budget for 4 people instead of 3. And there were the pregnancy medical bills. And it still didn’t happen. And then last October, while working overtime like a dog to pay off some bills, I brought home bedbugs from work. Not bad. We caught it early. But still, treatment was thousands of dollars. Plus, in my paranoid state, I trashed all of our furniture just to be sure. We needed new stuff anyway. Since then, we lived like vagabonds. An air mattress at first, though the kids still had their beds. No living room furniture. Piles of stuff everywhere, as we had thrown out several dressers/ storage pieces. Despite all of this, I still could not be comfortable here. I would be fine at work, but when home, I would feel this psychsomatic itching, as if something was crawling all over me. I was convinced I was not crazy, and so I called the pest control company back. I made them spray again. I was sure there was something going on, and I was afraid I would have to trash more furniture in my paranoia, so I just didn’t buy anymore. When the pest control company assured me the house was fine, I tried to relax, but couldn’t. I called a second company, who told me that, while they would love to take my money, they saw nothing here and I should get on with my life, that I never should have trashed my furniture in the first place, that they could have treated it. I waited a couple of more months, and then I called a third company in. Again, just to be sure. Again, I waited a couple of months.

This past week, I took a lot of money and I bought new stuff. Sofa, recliner, coffee table, end tables. 2 area rugs. A new dining room table and chairs. A new mattress and boxspring for us. New chests for the bedroom. I need to replace my desk and our entertainment center, but that’s all that’s left to replace. And window treatments, since the blinds are in horrible disrepair, and really have been since we moved in.  The massive Yoko Ono bed that was in the living room? Well, it wouldn’t fit the new mattress, and thus it is now Evan’s bed, as we had originally planned. John and I spent 2 back-breaking days working on de-cluttering, arranging, moving out what we didn’t want anymore. Packing up what we wanted and didn’t need. I got a little sad when we packed up Zach’s Pack&Play–are those days really gone so soon? Lo and behold, this looks like a home again.

I haven’t felt uncomfortable here since. I look forward to coming home from work now. I can relax here again. Except for the bedroom. I cannot sleep there for some reason, unless I am so tired that I pass out. I lay there in the bed and I look at the walls, the ceiling above me. That second slat on the intake vent that it slightly bent. A small knick in the paint in that one corner. I know those walls, that ceiling. I stared at them for months of my life. I focused on that chip in the paint as I was breathing through all of those contractions. I bit the corner of that pillow to keep from screaming from the pain of the progesterone injections sometimes when they were really bad. That room, those walls—they were my prison, really. For months and months. Sure, I would break orders and switch rooms, go to doctors’ appointments and ultrasounds, trips to the hospital. They were always so short, and I would always return to the room. And even now, As I lay there, unless I drop off to sleep immediately, it starts to feel like the walls are closing in on me. It’s almost like a panic attack and I have to squeeze my eyes shut and put myself someplace else. A coworker/ friend suggested I have PTSD from my pregnancy. How bizarre is that? What’s even more bizarre is that I think she may be a tad right. And then I feel really silly. I mean, Zach is 16 months old and I still can’t stand that room? I guess this is really the first time I am sleeping there since he was just  a few months old.

John hates this house. He wants to move. I don’t want to yet. I think that, if we can make this work a couple of more years, we can build a house. I’m worried about the expense. I make the money and I manage it, and I know that there are some things coming up. Big things. Autism spectrum disorders are notoriously expensive. As is grad school. And this house, though horribly flawed and small, is cheap. And as a result of us living here, we can afford to enjoy life a little more. I can take the boys to Toys ‘R’ Us on a whim and buy them each something they like for no reason at all. I can keep Evan in parochial school and not worry that the tuition is going to kill us. In a couple of years, I will have an MBA, John will hopefully be employed full-time, and I can afford to build new and still do all of those things in comfort.

This house? It isn’t a palace by any means. And yet it is. Because we have history here. And we have each other. This house is filled with all of the things and people I love most in the world. And while there are some scars, there are some pretty awesome memories. The best 5 weeks of my life were spent here: newborn Zach, Evan out of school for the summer, me on maternity leave and not bedrest. And it was just us. My boys and I. Family. And that spot over there? It was there that I would nurse Zach in the early days. And this other place over here? I would sit and help Evan with his homework. And over there, John and I would cuddle and watch movies together, ever the homebodies, as he would place his hands on my pregnant belly and feel Zach kick, talk to him through me.

It isn’t that I think that the memories will disappear when we move. I know they will always be with me. And I know that a home is more than just walls and roof. We will make new memories wherever we go. I guess this is the reason this house doesn’t bother me so much anymore. No house will ever be my home. No. My boys are my home. This house is just my physical address.

Avoiding Capture

Zach is getting fast. Fast at growing, fast at learning, fast at ruining the perfect photo op. Today, John and Evan headed off to class. My corporate finance class is finished. (Hallelujah, how did I get an A in that class?????) As is my op management (another A). No work for 4 days. And so it was just Zachy and I. I got out the camera in the hope that I could capture some very Zachy moments. And I found out that, though I sucked before, I really suck now, because you cannot catch the kid. Instead, I end up with a blur or a little hand grasping the lens of the camera. There was even one where the shot was empty because Zach bolted before the picture took. In his place was a picture of the corner of the coffee table. And my fave, the closed-eye-from-the-bright-flash look. But regardless of my lack of photography prowess, I want to remember these days. So this is what I got:

Just before bed: footed pj's, fresh from his bath, Johnson&Johnson-scented. My baby.

Tongue out. But that face. Cherub.

Mommy's glasses. Ripped off of her face. By rambunctious toddler.

 

Ahhhhh, the beloved Cozy Coupe. Is there an American kid who hasn't had one at some point?

Apparently, grabbing Mommy's camera is great fun!

Playing with him on the floor. Looking up at my son. My Little Big Guy.

Daddy's Recliner

What I Read: Room

The best book ever. I swear. Read it. Now.

Imagine the story. A 19-year-old college student walking across campus when she gets abducted. All she knows is the man has an old pickup truck–brown, she thinks. And he takes her to this place where she will ultimately be confined. Every night, he comes into the room where she is kept, and he rapes her. One night, they conceive a child. She stays in the room throughout it all. Throughout her pregnancy. She delivers the baby in the room, nurses him through his infancy, into toddlerhood and beyond. His name is Jack. Her identity? Ma. Just Ma.

The story sounds horrifying. Haunting. Of our worst nightmares. But just when one thinks they couldn’t possibly read such a tale, there is a detail that needs to be mentioned: this horrifying story? Told through the innocent voice of Jack.

Thus is the story of Room by Emma Donoghue.

Jack tells us all. And Ma is forced to raise Jack in the best way she can. Her captor brings them food and minimal necessities. On Sundays, they may get something special for which they have put in a request: Sundaytreat in Jack’s words. This may be a small amount of candy or a pen with which to write. Friends come to visit Jack through his television viewing: Dora and Boots, Spongebob. They read the same bedtime stories over and over. For comfort, Jack curls up with his mother and nurses. At night, Jack sleeps in the wardrobe and counts the squeaks old Nick makes on the bed with Ma. Will they ever leave Room, the only world Jack knows? I won’t say, because I really want you to read this book. I have read a lot in my time. Nonfiction or fiction, academic or leisure. Never have I encountered a book like this, and I doubt that I ever will again. There are many that I have loved. I don’t know if I love this one because my head is still trying to wrap around a story so profound. But I will go on record to say this is the best book I have ever read.

Room is Jack’s world. He doesn’t know anything else. He thinks grass, trees, cars, other people–all of it–only exist inside of the television. He has never had the sun shine on his face or felt wind. He knows Ma and he knows Room, and that is all. Ma explains later in the book that she couldn’t possibly tell him about all that exists in the outside world and then follow up by telling  him he will never have any of it. And she endures. She creates this life, this world, out of her love for Jack. We never hear anything negative from Ma because she taps into that strength for her son. We never hear it from Jack because he has no idea that anything else, any other way of doing things, exists.

The story is sad. Horrifying. Uplifting. Suspenseful. Endearing. Frustrating. I have never had a single book evoke so many emotions as Room did. I want so badly to say more, but again, I want you to read it. Even if you don’t have the time. Even if you are pulled in a million different directions. Hell, just a read a couple of pages at a time (though I doubt this is even possible). This is a story not to be missed. I’m sure it will be a movie someday, cheapened by Hollywood. But for now, it exists in its pure state.

Room by Emma Donoghue.  Buy it here.

On the Spectrum?

It started with this commercial:

And in the end, when the actor said, “My son has autism.”, John hung his head and slumped his shoulders as he said, “Mine does too.” And with that, the reality of what we are about to face has come through.

I’ve gone through stages. I was curious and inquisitive. I was interested in learning more. I was relieved when the psychologist mentioned what I thought to be true but didn’t know for sure. Of course the concrete diagnosis is yet to be made, pending testing with a group that has months-long waiting lists, And now I am to the point where I want to say, okay, I know. But what are we going to do about it? How can we help this child? How can we cure him? And then my own reality sets in. There is no cure. This is him. His life, the way he thinks, the way he is. And so I realized that this is something that we might as well invite into our lives, cozy up to, and get used to. Because it isn’t going anywhere.

Except that I am me, and I have a problem with a lot of it. Want to know what it is? Go to Google and search for Autism Awareness. Go ahead, do it. See what you come up with. Honestly, I was looking for a photo to include in this post. I like to do that, since plain text looks boring on the blog. So I did the search. Let me show you examples of what came up:

Shoes, bags, t-shirts, jewelry. Even a fucking Koozie for a soda bottle. I’m serious. And I would be okay with this. I really would, if the proceeds of the sales of any of these items went to any sort of organization that is doing something positive for autism. But none of them do. I visited the links. So what does that leave us with? Autism as a fashion accessory? Really? Does  my role as the mother of a child who (most likely, since the concrete diagnosis is at the hands of a team with a months-long waiting list) has this disorder mean that this have to infiltrate every facet of my life to where it is even emblazoned on my shoes, my purse, my God-awful tacky earrings?

I refuse to let this become who we are.

Evan is the little boy who can bild intricate structures out of Legos in the blink of an eye. He is a fourth-grader, a 10-year-old, a grandson. He is the little boy who makes us laugh, can be a bit spirited, loves his baby brother fiercely. He is the kid whose heart breaks when he sees a homeless person on the street, a lover of aviation, a scholar when it comes to the history of the Titanic. He is all of these things and so much more.

Oh, and he has Asperger’s Syndrome, which just happens to be on the autism spectrum of disorders. But this is far from all he is.

I will not let this become us. I will work to help Evan. I will do my part to support the cause because the cause was thrust into my life. I will not wear this as a fashion accessory, let it infiltrate every corner of my life. This is not all we are.

It’s not.

I will not let it be.

A Million and One Different Directions

Yep, that’s my life. I’ve been pulled in a million and one directions this past week.

First of all, there’s work. Work has been crazy. Exhausting. Busy. Every night that I’ve worked, we’ve been cut down to 4 therapists at night instead of 5, which means we all run our asses off. And so I come home cranky and tired and ready to just sleep and chill, in that order. But I don’t get to do either.

Because then there is school. I’m still in my Operations Management and Corporate Finance courses. I’m not sure what’s up, but never before have 2 classes thrown me for a loop like these two. Each course has the standard 3 papers per week, plus 2 hours of either live or recorded lecture, plus about 150 to 300 pages of reading, But the corporate finance papers are hard. Don’t get me wrong: I have 2 papers left in each class and I still have A’s in both courses, but those A’s have taken work. I usually work Thursday through Sunday which leaves me Monday through Wednesday to complete all of my school work. But there’s a catch.

Because John started classes. Which means on Monday, Tuesday, and Wednesday, I may be off of work and have all of the time in the world, but on those days, Zachary roams the house with abandon. We started by me trying to do both: school work and  be Mom Extraordinaire. It didn’t work. What really happened? I would type a sentence and get up and intervene in impending disaster. And feel horribly guilty that my time with Zach should be with Zach, not doing school work. And watch him destroy something with the mindset that, so long as it isn’t harmful to him, its okay. He tore an entire pack of flourescent pink index cards to bits and was working on the orange ones when I finally gave this up. So the new pla n is to not bank on getting anything done while John is class, which means my school work is now arranged around 2 schedules. And then came the NICU…

There was one day last week where I got 3 calls, and each one was regarding something else I have to do to get ready for the opening of our new Level III NICU at work. A ventilator inservice here. A mandatory class there. Licensing requirements. Drug screen, immunizations. It’s a liitle bit crazy. Because I have no time, this cuts into time I have alotted for other stuff. And then there’s Evan.

To get Evan treated and to make a full diagnosis, we have to do a million things. Tests, evaluations. Therapy appointments. Waiting on psychiatry referrals so the specialists can manage meds instead of our family doctor. Children’s is a one-stop shop, but there are a gajillion people there that all do something different. The Division of Developmental Disorders and Behavioral Psychology handles all Asperger’s evals, diagnoses, and treatment plans. And then the therapist handles his bi-weekly therapy. Now we are waiting for a referral to go through for psychiatry so we can get some medication management. This in and of itself is turning into a full-time job. A job, I might add, that is not well-managed by someone as disorganized as John. Which leaves me. I’ll do it. I won’t complain because I am grateful that Children’s is a stone’s throw away. If anyone is ever going to have something go wrong with their child, this would be where they want to be. In fact, there are people who fly in from other countries to have their child’s life-saving surgery done here. Yeah, I am that lucky, and I know it. But there is more to this, and it is another post altogether.

Zach? Well, Zach is the most laid-back, non-demanding person in this family right now. Yeah, how sad is that? That a toddler is the lowest maintenance? Pfft. But I keep trucking away. I somehow get it all done. I have no idea how. I used to be one of this smug people who would tell you that it is all in time management. But time management is only as good as the amount of time you have. I manage 150 hours worth of crap in 100 hours of time—not an exact figure, just an example. And it sucks. I know where my priorities are at: work–because I have to provide for the family and Evan needs my health coverage now more than ever, Evan’s treatment–well, just because, and my family. If I have to drop classes, I can. If I have to tell my boss I cannot do the NICU, I can. If John has to drop his classes, he won’t handle it well, but he can. I’m just trying not to have to do any of those things.

One day, I swear, I will be able to relax. I just hope it sin’t when I’m dead.

Mr. Personality

It is so funny to watch Zach grow. Evan was fun, also, but on a different level. Evan would amaze us with his cognitive development, while Zach amazes us with his personality. And he has lots of it. And this week marks 16 months of Zachary.

He points and grunts at everything. And I do mean everything. John calls him The Caveman. Seriously.  Or he will bring what he wants to us. For example, when he wants juice, he will get his sippy cup and bring it to us, while he stands there with this expectant look on his face, as if to say, “Drink. Juice. STAT.” Another funny ting he does now? Well, we have been big on teaching “please” and “thank you”. When he hands me something, I am sure to give an enthusiastic “Thank you, Zachy” with a smile. He must like this, because everytime you put something somewhere, he must think you’ve accidentally dropped it and he simply has to return it to you. A couple of days ago, I put my dirty towel in a hamper. I think I was getting ready for work. So Zach brings it to me. And then he waits for the “Thank you, Zachy”. So you tell him, and when he walks away, you put it back where you put it the first time. Until he sees this and brings it back yet again. This can happen many times before one finally just gives up and keeps whatever object, this time the towel. It’s cutely annoying.

He’s got a temper and he loves McDonald’s. It’s really a bad combo. We let him have a Happy Meal once a week, always with apples and white milk. But he has learned that logo. Seriously. And he sees and and must instantly think of his Happy Meal. How dare we pass a Mickey D’s and not stop. It’s awful because then he gets pissed. Seriously pissed. And throws a mini Zachy tantrum. Little does he know that we have been dealing with his big bro’s fits for a decade and can handle anything the mini-man churns out for us. We Are Professionals at this tantrum shit. It isn’t that we can’t hang. It’s just that, well, have you ever seen h0w many fucking McDonaldseseses are in  Cincinnati???? And everywhere we go, John insists on getting on either I-75, I-71, or I-275, as they connect the city and you can go 70 and not stop at red lights. He will go out of the way, in fact, to get on an interstate. It’s silly, really, but then you can see every McDonald’s for miles. AND you get the little signs that pop up at exits, and, well, we have a lot of crying in the car as a result.

Zach is learning. Every single minute of every day, it seems he learns more and more. And he isn’t a baby anymore. He’s a little kid, asserting his independence whenever he can. Sometimes he is content to ride in his stroller (still the BabyJogger City Mini), but other times, he wants to do it himself. Food has become a challenge because he doesn’t have the coordination to feed himself with a spoon yet, but is too indpendent to let us feed him. It’s cut several things off of his menu for a short while. For example, he used to have some yogurt in the morning everyday, and we have had to pass on that lately unless I want to need a garden hose and S.O.S. pad to clean him up after breakfast daily. He gets upset when we get home from being out and about, and we try to carry him in the house. He wants to walk in himself. It really slows us down a lot, but he needs this for his development, and so we just plan a little extra time for everything. And unlike his brother when he was a baby, Zach is fascinated by others. This especially goes for other small children. At Evan’s appointment last week, he actually scared a little girl because, while we were letting him stretch his legs a little by walking up and down the hall, he saw the little girl and promptly started chasing her without warning. I had to quickly intervene, and he looked so confused at the kid’s crying. He just wanted to be friends.

So it continues to be an adventure. He’s fun and sweet and just a little rambunctious, and I  love it. I wouldn’t have it any other way.