Standing In The Autism Line with My Magic Ring

" When did they stop putting toys in cereal boxes?
    When I was little, I remember wandering the cereal aisle (which surely is as American as fireworks at the Fourth of July) and picking my breakfast food based on what the reward was: a Frisbee with the Trix rabbit's face emblazoned on the front. Holographic stickers with the Lucky Charms leprechaun. A mystery decoder wheel. I could suffer through raisin bran for a month if it meant I got a magic ring at the end.
    I cannot admit this out loud. In the first place, we are expected to be supermoms these days, instead of admitting that we have flaws. It is tempting to believe that all mothers wake up feeling fresh every morning, never raise their voices, only cook organic food, and are equally at ease with the CEO and the PTA.
    Here's the secret: Those mothers don't exist. Most of us- even if we'd never confess-are suffering through the raisin bran in the hopes of a glimpse of that magic ring…

…If parenting is the box of raisin bran, then real mothers know the ratio of flakes to fun is severely imbalanced. For every moment you child confides in you, or tells you he love you, or does something unprompted to protect his brother that you happen to witness, there are many more moments of chaos, error, and self-doubt."

This excerpt is from the book known as House Rules by Jodi Picoult (one of my now favorite authors because of this book alone). Specifically, it is what Emma, the mother of the boy named Jacob who has a form of Autism know as Aspergers Syndrome, is thinking & explaining to the audience in one part of the book. I will tell you this…it's my most favorite book of all time. I legitly can say that, without any doubt & trust me--->that's a BIG deal when it comes to me & my books. But other than the book being my favorite thus far, this excerpt means so much more than me just liking it a lot & here's why…

My daughter's (Taterbug) father is in town, so he has had her for the last two days. There's a complicated & chaotic mess of a story behind all of that, but all you need to know is that every time he comes in & gets her I go into a downward spiral until I reach this massive ball of anxiety that actively consumes every square inch of my body very quickly. To take my mind off of the anxiety, I usually try picking up old hobbies that I haven't done in a while that used to relax me. For instance one time while he had her & Bubba was in school, I went running on the farm. I got to the back field (where it so happens coyotes have been spotted), did ten hill sprints up this enormous hill, & then got a phone call right as I finished my last hill sprint. Bubba had gotten sick at school & I needed to come get him since he couldn't ride the bus home because of his temperature. Needless to say, I was dying by the time I got back to my car. I showed up at the school looking like a hot mess in my sweaty nasty running gear. Another time he had her I decided to practice shooting my bow in the backyard while Bubba was taking a nap. Many a times I have gone back to working on old acrylic paintings I started way back when in high school. I don't know what it is about why doing these things are necessary to divert my attention elsewhere, but that's just the way it is. This time, I have been entrenched in this book.
I take care of Bubba & we play cars for as long as he is willing to interact with me, then he goes off in the living room floor playing his car & I sit on the couch near him & pick up my book. I read during nap time. I sit at the breakfast table & read while I eat. I stay up late reading just one more chapter. I hadn't read any in the past two months. Since Taterbug left, however, I've been reading every chance I can get. I read & I think about things. I usually try comparing myself to someone in the story that I can relate to in some way. In this case, all I can think about is how much I can relate to Emma, the mother of Jacob. A lot of the things she thinks & explains in regards to her children are a lot of what I feel on a daily basis. See, among many other things, I'm also a mother to a boy with Autism.

Bubba has been a miracle baby since before birth. From day one, I was told he wasn't going to make it to birth. I vividly remember going into my first ultrasound with my Nannie & Aaron, my son's father. The technician showed us a few things and then scheduled another appointment for two hours later with the Doctor to discuss the ultrasound because the Doctor wouldn't be back in until then. I, not knowing any better, thought this was the normal routine. Not a word was said about something being wrong with it or anything then. Two hours later, I'm sitting in a small exam room alone (Aaron had to go to work & I didn't pick up my Nannie because I didn't want to be late for the appt.) with a Doctor telling me my first born was more than likely going to die before he was even born. Fast forward to five years later, I have a four year old little boy who has proven every doctor, professional, & expert that has doubted him wrong. He has been through more hell medically in his life than most of us combined and still manages to be the happiest person I know walking on the face of this planet. This adorable, lovable, blue-eyed, energetic, always happy, peculiar little four year old boy is the light of my whole family. He is crazy obsessed over cars, buses, and a piano of any sorts. He has even somehow managed to learn to play "Jingle Bells" on the piano. He loves music. He hates most any food that is the color green. He loves school. He is petrified of Doctors. He will not sit still for longer than two seconds. He poops more than any kid I know. He can memorize a song tune after hearing the song just one time. He can sing the hell out of "Fat Bottom Girls". He has an internal alarm clock that goes off every single morning anywhere between 5 & 6:15 a.m. He is brilliant. His two favorite people in the world are his Papa and his Nannie. He calls his Diddy by his actual name instead of Diddy because his sister calls his Diddy "Aaron".
He is developmentally-delayed on a global scale.
He has Autism.

It's sad that most people see those two things as what's wrong with my kid than all the other aforementioned descriptions about him. The worst part is that most people don't actually "see" it. They see, instead, a kid who behaves badly, overreacts, throws insane tantrums, and doesn't mind his parents whatsoever. These people will keep their kids away from mine at the Doctor's office in the play area, on the playground, or at the toys in Burger King/McDonalds. " Don't play with him. Stay away from him. Don't do what he's doing or you're gonna get in trouble." That truly is heartbreaking. I sit there and watch as they criticize when they have no clue the number of surgeries that my blue-eyed oh-so-happy miracle boy has been through or the number of days that has added up to MONTHS of being sedated as a baby. The worst part is he has no idea. One of the traits of his Autism is that he doesn't like, know, or particularly care to interact with other children. He will try to briefly, but ultimately he prefers a room to himself with his cars. When the other kids tell him to get away, tell him they don't want to play, ask why he talks weird or ask what's wrong with him, I silently let out a little weep inside for him. If he takes their toy, it isn't because he just doesn't want to share or just wants what they have. He takes it solely because it interests/intrigues him. Regardless, he's mean because of that.

I'm not going to lie. I have mixed emotions myself about his delays and Autism. Yes, I do wish he didn't have developmental delays and Autism sometimes. *Insert worst parent of the year award right here.* I want him to be like all the other kids his age some kind of bad most of the time. BUT, it's not because it would necessarily be easier on me. Yea, it would. Sure, he'd be a ton more self-sufficient now at age four. I'd have a lot more time to focus equally on both of my children and everything else without having to worry about which of his sister's little toys he'll try eating next. Or whether or not he'll listen to me & come to me when I call his name outside as opposed to running straight for the road (gravel private drive) because that's where that big truck with those tires was just two minutes ago. It'd be much less energy & time consuming getting him dressed & in the car. That's not the reasons I wish for his developmental delays and Autism to be gone though. I wish it mostly for his sake. I've wished he was "normal" for the sake of not being bullied all his life. For others not looking at him as "lesser". I wished it because I want him to have friends. I've wished it for him to be able to get his drivers license or to go on dates with his girlfriend. I've wished it for him so he wouldn't have to keep attending these meetings where strangers test his knowledge, social, and learning skills ever year. I've wish it so that he could have actual conversations with me where I can understand what he's trying to communicate when he gets frustrated. I've wished it for him for so many reasons. Then I remember that he's my miracle boy and he's happy. He's got a crappy immune system, to say the least, but he usually rebounds from his sickness rather quickly despite how often he gets ill. So for the most part, he's healthy too. So why wish for these things? What if he was "normal" (if ever a state actually did exist)? He most certainly wouldn't be our Bubba anymore. He wouldn't fit into this family the way he does…which he does so extremely well. He's our "normal". That's all that really matters.

Showing off his bus, like a cool kid.

Sometimes, I feel like that mother looking for that magic ring while all the other mothers have found it. I'm searching through the endless amount of raisin bran just to find that magic ring, wondering why I even started this search in the first place. I know the ratio is severely unbalanced in this quest. I know that no matter how hard I work towards it, there are going to be more moments similar to the one where he had a breakdown because he saw a toy he couldn't have compared to the one where he picked out a toothbrush for his sister at the dentist office too. I know there's a good possibility that potty training will be a nightmare with him & I will be washing his clothes everyday for a year straight. I also know that when he actually gets the pronunciation of consonant letters down in his speech and can speak in complete clear sentences, I will cry…hard. Like, that happy ugly cry. So despite the fact that I wish all these "normal" things for him, the "normal" really isn't the magic ring. He's the magic ring. And no matter how much raisin bran I have to eat where he is constantly getting on his sister's nerves or chewing tires off of his one hundred & counting cars/trucks/buses, the magic ring will be there at the bottom of the box where he passes out in the floor at 9:15 P.M. or where he'll give his sister a cookie when I hand him two.

I recently read an article by another Blogger about her son's inability to talk. Throughout it, she discussed how she took him to get it checked out & how a speech therapist told her he was at a 3 month old level for language, so Autism maybe came into play. Later on, they determined it was actually something to do with the formation of his split uvula that was the problem & nothing to do with Autism. At first, the way she worded part of it just rubbed me the wrong way.  She said:

    " I felt giddy at the massive weight being lifted, and at having a clear problem with a clear solution for my son. I felt like I had been moved out of the laborious and winding autism line and into the speed pass line with a surgery quick fix. I felt guilty at leaving that line with scores of other mothers who were stuck there with their kids, confused and drowning under all of the mixed messages and complex treatments."

Waiting for the bus.

That facial expression!

I'm starting to look at it differently & not take it so personally (like I do with everything related to his diagnosis), but it still makes me uneasy. I'm not saying what she said was wrong or anything like that. I would probably be feeling the same if I woke up tomorrow & they told me that my son's current diagnosis could be fixed with a surgery quick fix (I should mention here that I don't see surgery as a quick anything. My son has endured numerous surgeries & I only remember one of them being relatively quick).  The thing that gets to me is saying that we were stuck in this line with our kids, confused and drowning. I'm not stuck anywhere with him, much less in some single filed line. Mostly, because he can't stay still enough to actually stand in a line (we've tried). Also, I'm here with him because I want to be. I fought for him through my whole pregnancy. I continued to do so with hospital visit after hospital visit. I still do as much as I can. I go to all of his school meetings & events. I have a massive binder full of activities to practice his letters, numbers, shapes, & writing. I'm also not confused & drowning. I have a choice in what messages I want to receive & treatments he gets. Currently, an IEP, a wonderful teacher, & a great relationship with the school system seems to be working wonders. If that starts to fail, we will reevaluate.

I don't know where Autism comes from. I have my theories, just like every other person/scientist/parent/professional/expert does. I think it applies differently to each particular case. In Bubba's case, I personally think it's something of a mixture between genetics & the drugs he was given as a baby while he was in the hospital. In reality, a lot of my qualities that are kind of "out there" or borderline OCD he seems to display at an enhanced level. I don't think none of this applied until after his longest stay in two different hospitals where he had to have major surgery to his throat & be sedated for a little over a month. Before that stay, he was saying Mama, Dada, & Papa. Afterwards, Mama was the only thing he could say for the longest time. Before, he was walking around & actively engaging with people at normal skill level. After, he was behind. I mean, he was on so many drugs to keep him sedated & to help him get better that we had to ween him off of them, Yes, my kid became an addict in the hospital. I wish there was another route we could've taken to prevent that, but his health issues were too severe to even consider any other options. His throat was almost completely shut, for goodness sake. So while I stick by the opinion that I think the drugs had something to do with it, I also want to mention that I also think my son would've suffocated from any one of his upper respiratory colds if it wasn't for the surgery he had to have to widen his throat. With that surgery was the necessity for drugs to help him heal properly. From a slightly educated perspective, however, I do believe that all of the drugs they used did have a drastic affect on the way his brain might've developed. I took a few humans envelopment courses in college & I know that development in the first year, especially the brain, plays a critical part in the long-term development. I believe that the drugs might have played a large part in shaping the connections & development in his brain, which in turn led to the interaction of overstimulated genes that displayed qualities of Autism. Of course, that's just my thoughts on it. I'm not a scientist or anything. There's also theories on a certain diet that's gluten-free & whatever else that'll almost cure Autism…yea, I'd like to see the creator of that diet try to get my son to eat that crap. He'd look at him/her like they were stupid or something.

" Are you being serious right now?"

" Hahaha. Yea right…not happening."

My Grandpa passed away this past Fall (October 2014) from lung cancer. He was extremely ill for the couple months prior to his death. The last time I visited him/saw him alive, he was to the point where he looked like a ghost of his former self. He remembered very little, mixed up what he could remember, could barely speak, & couldn't even hold himself upright sitting on the side of the bed. I had come because my Nannie asked me to. She said she needed to tell me something. What she needed to tell me was that they said (the Hospice nurse, not actual doctors…because doctors at the Veterans Hospitals around here are pathetic idiots) that he probably had less than a couple of months to live, being as that's usually when Hospice is called in. I only took Taterbug that day with me because I didn't want Bubba to agitate Grandpa or try to climb up on him & hurt him or something. I vividly remember everything that happened after Nannie told me that. I went to the living room to sit in a chair across from where he was sitting on the side of the bed. He looked horrible & was talking out of his head. My Uncle's wife & my Mother were standing on both sides of him supporting him every time he gave out. He asked Taterbug for a kiss & called her his pretty girl. He kept pointing towards the t.v. & mumbling something. My Uncle's wife kept asking if he wanted the t.v. on. He'd shake his head & repeat what he said. It clicked for me pretty fast, He was pointing to Bubba's picture on top of the stand & saying "my little Buddy". Nothing else he said afterwards regarding other subjects made any sense. That was as clear as day though. We left a few minutes afterwards. He passed away a week later. That is something that I have yet to get over. Of all the incoherent statements & thoughts he blurted out during him days ill & all the memories he forgot & mixed up in his head, he never forgot that. Bubba was his little Buddy.
It didn't matter that he was developmentally-delayed.
It didn't matter that Bubba had Autism.
It didn't matter that Bubba drove Grandpa up a wall by running through the house when Grandpa told him not to one thousand two hundred & forty-seven times.
He would hold him as a baby until they both fell asleep.
He couldn't stand Bubba crying when he was a baby.
He wouldn't smoke inside the whole time Bubba was at their house.
Bubba's birthday was the only birthday party of all of his Grandkids he ever went to.
He was amazed by Bubba's energy & happiness.
Bubba was his little Buddy.

Personally, I don't understand what makes up Autism or when it even started becoming a diagnosis. I have no clue why my son ended up having it & not the other umpteen kids in all of the NICU & two PICUs he stayed in. I don't really care. I don't necessarily like my kid having a diagnosis of Autism, but it is what it is. It's also a lot to do with who he is. It's a part of him, regardless. It's not a disease that's insta-curable with a little medicine or some surgery. He'll still continue to wake up at 5-6:15 A.M. He'll still line his cars/trucks/vans/buses up a certain way whether or not he can pronounce his consonants & write his name. He'll continue to play his electric piano until the batteries run dead. His sister will continued to be pissed off when he decides to chew on her new doll's hair or mess up her stuff in her room. She'll also sit beside him in her chair & "read" a book to him or tell him to back up from the t.v. when he's standing too close to it. He's her Bubba & she loves him to death. He's Grandpa's little Buddy. Nannie's little Buddy. Papa's Hotrod, Little Man, & Partner in Crime. There is no doubting that he is his Papa's favorite grandkid. My Diddy straight up tells everyone, even my siblings, that Bubba is. They all accept it too. MY adorable, lovable, blue-eyed, energetic, always happy, peculiar little four year old boy will go on being the light of my whole family…our little magic ring.

9:15 PM: Energy depleted.