Wednesday, October 23, 2013

At Least He Doesn't Look Autistic

"Well at least he doesn't look autistic."

In the months since Carter's autism diagnosis, countless people have tried to comfort me by reassuring me that there is nothing obviously, physically wrong with Carter...well, aside from his super thick glasses and ankle braces. I suppose what they mean is that he doesn't have the trademark characteristics of, say, a child with Downs; something that places him into a defined category of disability. I usually take the statements with a smile and a thank you. Surely they're just uncomfortable and don't know what else to say on the subject. In truth, it brings me no comfort to know that despite his unimaginable daily challenges, Carter is still "cute". Autism does, in fact have a "look", it just seems that no one knows what to look for. 

Carter falls into this awkward gray area where he is high functioning enough that he is going to be able to succeed on his own one day, but limited enough that we are going to have a hell of a time getting him there. There are moments, horrible moments, where I hate where Carter fell on the autism spectrum. If he had more severe symptoms, maybe his struggles would be more obvious to those who don't know him. Maybe people wouldn't stare at him in public, criticizing my inability to control his behavior and providing horrible commentary that is not at all out of earshot. They would immediately recognize that something is different about him and hopefully cut him some slack, but this would mean wishing a greater burden on my baby. If he weren't autistic at all, we wouldn't be in this predicament, but I would be wishing away one of the things that makes Carter so uniquely incredible. Autism is hard. 

One of the most endearing things about Carter, and something that makes me fall in love with him all over again on a daily basis, is his stimming. There are several things that he does for self-stimulation, most of them not so charming: his nails are bitten down to bloody nubs as a result of his ever-present anxiety; he repeatedly pounds his fists up and down his forearms out of frustration; he'll rub the flesh off any earlobe within his reach in an effort to calm down. What I absolutely adore, though, is what happens when he is happy...

I recently accompanied Carter on his preschool field trip to the pumpkin patch. I was heartbroken, watching him play alongside the other kids, but never with them. He would wander off by himself to spin in circles and, when dizzy, throw himself down in the mud. I was already battling tears (because I didn't want to be that crazy mom) when Carter found the slide. It wasn't much, just a wooden ramp up to the top of one of those big corrugated culvert pipes, but Carter immediately fixated on it. The ramp was too steep for him to walk up (he refused to wear his braces that day) so he dropped down on all fours and carefully made the ascent. At the top, he paced around, inspecting every inch of the top of the slide. He had to step aside to let a couple other kids through, then he went right back to his inspection, look...pace...look...squat...look...pace...turn...repeat. Finally, he was ready. He settled in at the top, and let go. Within a second, he had shot to the bottom so quickly that he landed on his bottom a good three feet from the base of the slide. I braced, waiting for the wail that usually accompanies any unexpected jolt to his senses, but it never came. Instead, a huge grin broke across his precious face, and he started stimming.

It starts in his hands, which begin to flap like a tiny baby bird's. Then, his entire body starts to quiver. His breath comes in quick gasps and it's as if he can't decide whether to laugh or squeal...the result is a curious combination of both. He starts to run, but there is so much joy and energy coursing through his tiny quaking body that he becomes increasingly uncoordinated and his run is then punctuated with clumsy skips. On this day, in the middle of the pumpkin patch playground, I could no longer hold back the tears as my son, trembling with elation more real and intense than any of us will ever feel, plummeted repeatedly down that slide and onto the muddy ground below. I've never seen anything more beautiful than this display of pure joy, nor have I ever seen anything "look" more autistic. 

Telling me that my child doesn't look autistic is in no way a comfort. It in no way takes away the worry I feel each day as I try to adapt the world around him so that he can function. I still have nights when I lay awake, looking for any trace autism inside myself, trying to figure out how my son ended up this way. I think of every single awkward social encounter I've had; break down my own, sometimes debilitating anxiety. When I don't find the answers there, I retrace every moment of my pregnancy, searching for the turning point where Carter went from neurotypical, to autistic. I've spent hours obsessing over this, as if I could come up with a better explanation than the arsenal of doctors from various specialties that Carter has at his disposal. I always come to the same conclusion. It doesn't matter where it came from or how it happened. That's not something I can change. I'm not even certain that I would change it. I have more love for this boy than my heart knows how to hold and I am so proud of him...for exactly who he is. 

I want the world to feel that way about him too. I want them to see him and understand him rather than dismiss his differences simply because he's "cute". I want them to recognize his more difficult behaviors as a result of the incredible overstimulation he experiences every second of every day rather than shake their heads in disgust at the "misbehaving" little boy. There's a quote out there somewhere that says something like "Autism isn't a disability, it's a whole different operating system." As corny as that sounds, nothing is closer to the truth. Sure, my blonde-haired, blue-eyed boy looks just as normal as any other kid, but what's going on inside of him couldn't be more different. I'm so tired of the look of sympathy people give me when I mention the word autism. It's nothing to be ashamed of. It's how Carter operates and it shouldn't be hidden, it should be celebrated and society should be educated. Besides, the signs are there for those who care to take the time to look. They're there in the gnawed off fingernails, in the self inflicted punches, in the tears when all of his senses are bombarding him at once, in his silence and the terror on his face when we are in a crowd.  During his field trip that day, I was told again that "he doesn't look autistic." I shook my head in silence, watching my hand-flapping, squealing son, shaking with joy over his last trip into the mud at the bottom of the slide; watching as he stood apart from the rest of the class, spinning faster and faster, pure bliss on his face as he collapsed to the ground; and I knew from that moment on, that the world can no longer be deprived of seeing him the way I do. 

Tuesday, October 15, 2013

Hey, Moms and Dads. You're Getting Lazy.

I had this fantasy when I graduated high school that I was going to become a groundbreaking, inspiring, incredible teacher. I truly believed I was going to change the course of history through the lives I touched with my work. A year before I graduated college, however, I changed my major to nursing. Why? Because I was quickly realizing that all of the reasons that made me want to teach in the first place, all of the hopes, dreams, and inspiration I wanted to pass on to growing young minds, would never be realized...because parents are lazy. 

We live in a society where we expect others to do our dirty work. This includes raising our children. Deny it all you want, but it's true. Parents drop their children off at school and honestly believe that the 7 hours of group instruction they receive while there will be enough. 

Here's a newsflash people:
A teacher's job is not to prepare your child for the world. It is not to shape them into the people that you want them to become. They are not responsible for your child's education. That is your job. A teacher's job is to inspire a passion for learning, to encourage, to challenge, to be an example. While the role they play in your child's life is invaluable, it is purely supplemental. You are your child's first and most important teacher. 

It's amazing how many kids are entering the school system unprepared. A staggering number of children are starting Kindergarten without knowing their alphabet or even how to count, leaving public school systems to clean up the mess parents are leaving at their doorstep. The school system shouldn't be teaching kids how to count, or read for that matter. These fundamental basics should be taught at home, not in a classroom where your child is one of many. One on one time with your child is crucial and can very easily be the difference between their success or failure.

Parents are also finding the realization that their children are average a very difficult pill to swallow. People are getting all frazzled when their kids bring home "average" grades on their report cards. In fact, just last night, I witnessed a teacher being publicly berated because a child that goes to her school received a B on his midterm. This child isn't even her student yet the mother was lashing out at her anyway. The teacher's response, however, was beautiful. "I'm sorry you're upset but it's wonderful that he's not a straight A student. Would you rather him just sail through school, or do you want him to be challenged? Besides, you are your child's first teacher. At school, he is one of maybe 50 kids, but at home, he's number one." The mom responded with a lot of nonsense about how she was busy and couldn't be expected to "do it all." I couldn't believe someone could stand there and say they are too busy for their kids and act like they aren't her top priority. I was also glad that the teacher was able to hold her own through all of the ridiculous ranting because things like this are happening all too often. Parents are refusing to make adequate time for their kids and teachers are being unfairly expected to pick up the slack. 

When my middle son began needing physical, occupational, and speech services, I took him to therapy three times a week where he worked intensely with his therapists. I quickly realized though that there were 165 other hours in the week where he wasn't getting what he needed. I've never had an interest in being anyone's therapist but three hours a week wasn't going to teach my son how to speak, how to interact in society, or build his muscles so that he could walk without braces on his legs. Those 165 hours are my responsibility. I would move heaven and earth for my kids. In this case, I rearranged my work schedule, gave up anything that resembled a social life and dedicated myself to being Carter's number one therapist. Why? Because that's what a parent is supposed to do. Carter wasn't going to succeed if I didn't make time with him a priority. Sure, he still receives therapy from the "professionals" but I view that time as a learning experience for myself. They model the things that I need to be doing with him all the time at home. I learn from them and act based on their example, and because of that, my little boy is thriving. 

The same principals apply to your child's education. If they're struggling, you find a way to be there for them. Be the parent willing to move mountains for your child. Use your child's teachers as examples for yourselves. In my house, there are 5 hours between the end of the school day and bedtime. That's 5 hours I could be continuing their education. It doesn't have to be all books and worksheets either. Discuss world events, cook together, just share the events of your day and how you feel about it. There are learning opportunities everywhere but we can't share them with our kids if we aren't there for them. 

Monday, October 7, 2013

Pumpkin Pie Cupcakes with Whipped Cream Frosting

It's fall, which in my house means pumpkin everything...pie, bread, you name it - we love it. These cupcakes are no exception, right down to the awesome Oreo "crust" on the bottom. Everything about these cupcakes screams fall. The only thing missing is the apple cider!

For the cakes:
24 Golden Oreos
1/2 cup of oil
1/2 cup of applesauce
3 large eggs
1 teaspoon of vanilla
1 1/2 cups of sugar
1 cup of brown sugar
15 oz can of pumpkin puree
2 3/4 cups of flour
1 teaspoon of baking soda
1 tablespoon of pumpkin pie spice
2 teaspoons of cinnamon
1 teaspoon of nutmeg
1/2 teaspoon of salt

For the whipped cream:
1 pint of heavy whipping cream
1 cup of powdered sugar
2 teaspoons of vanilla
Pumpkin pie spice to sprinkle for decoration

Preheat oven to 350 degrees and prepare your pans with liners.
Separate Oreos and place them at the bottom of each liner, cream side up. (You can discard the cream-free cookies...or eat them if you like that sort of thing)
Using a wooden spoon, combine the oil, applesauce, eggs, and vanilla. 
Stir in sugar and brown sugar until smooth (Make sure it's lump-free!)
Stir in pumpkin puree
In a separate bowl, whisk together flour, baking soda, pumpkin pie spice, cinnamon, nutmeg, and salt. 
Add dry ingredients to moist ones and stir just until combined. (You don't want to beat all the air out of your mix!)
Fill cupcake liners 3/4 full and bake for 18-22 minutes. 
Allow to cool completely before frosting.

Using a whisk attachment, beat heavy whipping cream until stiff peaks form. Add powdered sugar and vanilla and mix until well combined. After you pipe it onto your cupcakes, you can sprinkle lightly with pumpkin pie spice for decoration. 


Sunday, October 6, 2013

Changes - a Carter Update

I hate taking my kids to other people's houses. I spend the entire outing with a pit in my stomach, just waiting for them to cause some sort of disaster; whether it be Natalie being vocal about her need for a nap, or Carter pooping on a rug or something. 

That's exactly how I spent yesterday afternoon when I dropped Jake off at his friend Kelly's house to play for a while. Kelly's mom, Katie, is one of my first and best friends that I've made since we moved to Stanford. She's been there through all of the craziness we've been through with Carter and she has seen him at his worst. She also hasn't seen Carter since this summer. 

The last time Katie saw Carter was at Kelly's birthday party in June. Carter spent most of the party on the floor of her living room, butt up in the air, rubbing his face on her rug. I'm not sure if he even talked while we were there. Yesterday, I thought nothing of it when Carter walked in and spoke directly to Katie in words that she could understand...until her eyes grew as big as saucers and her jaw dropped to the floor. I was just thankful he wasn't screaming or spitting on anyone. When he walked calmly down the hall to Kelly's room to play alongside the other boys, I realized that we have come a very long way in a very short time. 

A couple months ago, Carter was still struggling to make himself understood. His speech therapist approached me in the cafeteria while I was having lunch with Carter the other day to tell me how she couldn't believe the progress he has made. I smiled and thanked her but didn't think too much of the compliment. I spend so much time helping Carter overcome his obstacles that I haven't stopped to notice the incredible changes he has made. He enunciates now!!! His speech is by no means perfect but I'm finding that I am no longer the only one who can understand him. 

He's talking to kids in class. After weeks of silence, Carter broke out of his shell and is actually making friends. His teacher told me that he sometimes doesn't know how to take it, but everyone wants to play with Carter. Here I was, worrying obsessively over Carter never having anyone to play with because of his behavior and now he's the popular kid in class? I couldn't be happier. 

On top of these social changes, we're making huge strides physically as well. His strength is improving. Sometimes, I'll even let him go to school without his ankle braces. He's walking farther before he tires out. His core strength is improving and he's actually able to sit unsupported for a few minutes at a time. 

Last night, he grabbed a hot pan on the stove. While the burn didn't hurt him, he recognized that it was hot and withdrew his hand before it could do any real damage. It wasn't long ago that he would have just let his hand sit there until an ER visit was necessary. The occupational therapy is working!

The most life-changing event of the past couple weeks has been his vision. A year ago, we were told that the abnormalities in Carter's optic nerves would cause him to lose his vision entirely. As rapidly as he was losing his eyesight, it seemed that this was going to happen sooner rather than later. We gave up on UK and found this rockstar opthalmologist at the Vanderbilt Eye Institute who said that with a few surgeries, he thought he may be able to salvage Carter's eyesight. After just one surgery, Carter's brain is recognizing both of his eyes. The vision loss has all but stopped. The eye patches are history (for now) and we don't even have to go back to Nashville for another 6 months. No braille for this family!

I understand now why Katie's jaw hit the floor, and why she nearly stroked out when Carter shared his beloved Mickey Mouse stuffed animal with Kelly. (By shared, I mean he stomped down the stairs with it, shoved it in Kelly's face, said "Play wif dis", and stomped away.) It's funny how blind to all of this I have been when I'm the one who obsesses over improving Carter's life every second of every day. My sweet boy is making real, tangible improvements. We are always going to struggle with his autism and other physical issues, but now I have hope-real hope-that our future isn't going to be quite so hard.