Puzzling it Out: An Autism Story

Today is World Autism Awareness Day.
While the world at large is made “aware” of autism today, here in our house, we are aware of autism every moment of every day. Autism is pervasive, in that it affects multiple systems of the body, but also in that it affects every part of our lives.

My son was one of the most social, easygoing babies I have ever met. He hit all of his milestones on time, even early, in some cases.

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I have spent my entire life hearing that I was a brilliant little kid (imagine peaking at age four), and people who knew me back in my glory days often remarked upon how he took after his mama.
At seventeen months, he began to point out and identify letters and numbers. If you’ve spent a lot of time around small children, as I had, being a daycare provider, you know that this is peculiar. I was teaching Pre K at the time and I had plenty of completely typical kids who still struggled with letter and number recognition.
By some coincidence, while this was happening, a facebook friend of mine posted about her son’s hyperlexia and its relation to his autism diagnosis. Somewhat nervously, I mentioned this to a coworker at the daycare center and she laughed. “Jamey? No way. He’s just really smart.” Mollified, I let the idea go.
Right around that same time, Jamey began biting other kids at daycare. Having worked in the industry for a decade, I had seen my fair share of serial biters, but it is a different animal entirely when it’s your usually sweet, loving baby who is inflicting bodily harm on unsuspecting kids. Nothing worked to curb it. There was no method to his madness, no way to predict when he was about to attack. I can’t remember ever feeling that helpless in my entire life. Eventually, my director suggested I contact early intervention. There was some buck-passing regarding who could work with him, as I lived and worked in two different areas of coverage and, before it was sorted out, the biting had let up. When I gave birth to my daughter a couple months later, I left the daycare center to stay home with the kids.

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By the time Early Intervention came out to evaluate Jamey, he had just turned two. During the initial visit, the specialist asked if I had any concerns about autism. I mentioned the early letter recognition, but said I wasn’t terribly concerned. She said, rather convincingly, that she wasn’t either.
At some point in the next year, however, it became glaringly obvious that we had been mistaken. He began to exhibit behaviors that are frequently attributed to autism, the “red flags” that I had learned to keep an eye out for while working in the early childhood field. He stopped playing with toys, preferring to line them up, or hold them up in his peripherals to examine them closely. He became prone to meltdowns, flapping his hands, and dropping to the floor. He began to fixate so intensely on what he was doing/thinking, that it was essentially impossible to get him to focus on anything else. He stopped communicating, and began speaking only in lines from Sesame Street episodes. By the time he hit his third birthday, there was nary a doubt left in my mind that he was on the spectrum, though it would be nearly a year before we would get in to see a developmental pediatrician, who would confirm it.

There’s a cliche in the autism community “If you’ve met one person with autism, you’ve met one person with autism.” It’s meant to convey what seems as though it should be the apparent fact that people on the spectrum are not a monolith. Like any other population, they are individuals with their own set of skills and challenges. While there are hallmarks that most autistic people have in common, autism means something different to everyone affected by it.

In our house, autism means a constant, epic war between routine and chaos.

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It means that we never know what time we’ll finally be able to go to bed. It means striking a balance between giving in and standing our ground. It means that we can’t always get out and do the things we want, because our lives and plans revolve considerably around what kind of day Jamey is having. It means that there is constant noise. It means repeating ourselves a million times and sometimes still not getting the intended result. It means feeling like we are constantly on the defensive, because the general population doesn’t understand people like Jamey. It means enduring unsolicited advice from every armchair expert on the planet. It means digging deep and finding patience when we feel like we’re at the end of our respective ropes. It means worrying endlessly about what the future holds for him and crying at the thought of what would happen to him if we died. It means that there are days where the autism wins.
It also means snuggles, and lots of them. It means watching the shocked, impressed looks on people’s faces when they hear someone as small as Jamey spelling words at the grocery store, or doing subtraction at the playground. It means being immensely proud of things that most parents take for granted, like mastering a basic self-help skill, or greeting someone without being prompted.

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It means laughing to the point of tears over something dreadfully simple because his laughter is so infectious that I can’t help but join in. It means accepting that my four year old’s knowledge of certain subjects is already more vast than my own. It means feeling like my heart may explode from how fiercely I love this little human who keeps me up all night and throws his dinner on the floor. It means that I would not change a moment of this crazy life or a single hair on this little boy’s head.

If you’d like to learn more about autism, or support an organization that cares more about autistic people than lining their pockets and fear-mongering, check out ASAN.

A Series of Unfortunate Events that Have Kept Me from Blogging for Six Weeks

Miss me yet? I know, I know. I have been positively dreadful about keeping up with my blog lately. I have a million and one excuses, but most prominent is that my typical routine has been so disrupted by illness and inclement weather, that I haven’t had a normal week since before February vacation. And I am, undoubtedly, a creature of habit. If it makes you feel any better, I haven’t touched my bullet journal or my novel in the last six weeks either.
But enough with excuses. Back to blogging!

Walking in a Cold, Soggy, Windburnt Wonderland

I have spent all thirty of my years living in New England. For someone so very accustomed to winter weather, you would think I may have adapted by now. You would be mistaken. I hate shoveling. I hate slush. I hate having to bundle up (and re-bundle…because I ditch all my cumbersome cold-weather gear any time I am in an enclosed space). I hate my car being encased in salt and ice. I hate dressing my kids in super cute clothes that no one gets to see under their coats (this one may be a me problem). I hate my heating bill. But the winter isn’t all bad. Just like 95% or so.

Here are the very few redeeming qualities that winter possesses for me:

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Football. Fall always gets all the credit with football fans, and yes, the rush that comes from the beginning of the season is brilliant, but c’mon. Play-offs. Super Bowl. Pro Bowl (jk fuck the Pro Bowl).
Of course, being a Pats fan nearly always pays off come January, so I may have more of a reason to appreciate winter football than most.

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Christmas. You know those jackasses who start playing Christmas music the day after Thanksgiving? Don’t worry, I’m not one of those. I’m actually one of those even more annoying jackasses who starts playing it the day after Halloween.  This year, I’m pretty sure I spent approximately 5% of my life wandering through the holiday displays at Target and Homegoods, soaking in the magic.

 

 

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Hygge. If you’re not familiar with the Danish concept of hygge (unexpectedly pronounced (HEW-gah), it’s basically a hipster-y way of saying coziness. Yes, there’s more to it than that, but the pseudo-bastardized American version mostly means a plethora of blankets and socks and low lighting and greenery and warm beverages, all of which I am rather fond of.
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Quiet snow. There is something unbelievably peaceful about snowfall. I’m not talking about blizzards, which account for most of the snow we get around here. I mean the kind of snow that falls gently and muffles the sound of the world.

 

Signs of spring. This is a bit of a gimme, but there is something so hopeful about little hints that spring is on its way. Technically we only just past the halfway point Screenshot_20170409-175134of winter last weekend, but we all agree that winter sort of unofficially runs from December through February, and that March is like a transition into spring, right? Last Monday was Truck Day for the Red Sox, which means that baseball is just around the corner. Local photographers are already starting to book their spring mini sessions. We’re only about a month away from the start of Daylight Savings Time. It’s coming, guys.

And Now His Watch Is Ended

I used to be an avid reader. I was the kid who would camp out with a flashlight under the blankets after the lights were out and stay up half the night because I just needed to know what happened next. Just one more chapter. The one who read ahead in class. The one who broke out a book whenever I had free time. However, like most things that I once enjoyed, it has taken a backseat to parenting. With two small, very busy children, I simply do not have a lot of time to myself. And when I do have time, the peace is usually too short-lived to dig into a good book. But I sorely missed reading.
A few years ago, I discovered the closest thing to a compromise that exists: audiobooks. Sure, you miss a few things that you get from reading the book (like the ability to assign your own tone/intent to characters’ words), but I think you gain a few worthwhile things, as well. There is a wonderful performance aspect to it. And you can take in a story while folding laundry or cleaning the playroom or driving your kids all over creation.
Prior to subscribing to Audible, I had made several attempts at reading A Game of Thrones. I enjoyed the show and I knew I would enjoy the books. But as much as I loved the story and the writing, it was simply too complicated for me to keep up in between screaming at parenting my kids. After reading the first five chapters, for the billionth time, I decided to try out the audiobook.
Screenshot_20180208-090722I was instantly hooked. The narrator, an acclaimed British actor who I had somehow never heard of named Roy Dotrice, was incredible. He had a unique voice for every one of the 200+ characters and read the book the way I expect it was meant to be read. It was dramatic and passionate, and I couldn’t get enough of his performance. I went on to download the entire series, and have since listened to it four times.
Whenever  I have heard people complain about GRRM dragging his feet on Winds of Winter, my thoughts have drifted to Roy, wondering if he would live long enough to narrate it, because truly, I cannot imagine anyone doing half as good a job.

Last night, I was on my favorite online forum and someone mentioned that they were listening to the ASOIAF books for the first time. I was typing a reply, and I googled Roy to figure out his exact age (I knew it was ninety-something) and I found out that Roy had passed away in October.
I felt stunned. I felt hollow. I felt bereaved. And, in truth, I also felt a little ridiculous. After all, I had never met this man that I am currently crying actual tears for. I hadn’t even followed him closely enough to realize that he had died.
But I had spent more than 800 hours listening to his voice. He had gotten me through long drives and dark days. He had lulled me to sleep countless times. He had given life to a story that has come to mean more to me than I had ever anticipated. We shall never see his like again.

Please Be Prompt

I have a secret. I am not as creative as I pretend to be. My mind works in a very peculiar way and while I often have original ideas, I struggle quite a bit with developing  and connecting them to create something.
I spent a lot of time learning this about myself. It was really hard to come to term with at the beginning. I had always thought of creativity as one of my defining characteristics. But if I was so creative, then how come I couldn’t finish my book? How could I have been a fabulous (and oh, so humble) writer in school but such a terrible blogger? It wasn’t easy to reconcile, but I knew I had to get to the bottom of it. Not writing was making me miserable.
The overarching theme of my 2018 resolutions was sapping misery from my life in any aspect where it existed, so I dove headfirst back into the blogosphere. I managed to write two posts in a week, and rewarded myself by purchasing my domain name. #superseriousblogger
And then, as I always do, I hit another wall. I tried writing good content. Really, I did. I have like, sixteen abandoned drafts going right now. But nothing was coming together the way that I wanted it to.

Well, enter Ali. Ali (or as her close friends call her, Bowerbird, By Ali), is the singular best person I met in my 20s. She and I have an awful lot in common, including a big ol’ soft spot for the written word. Ali, however, is far more creative and motivated than I am.
On more than one occasion, she has reached out in an attempt to get me to be her blog buddy (like a gym buddy, but like, without the sweat) and I always agree in the way you agree to catch up with an old friend that you bumped into at the grocery store “Oh my goodness, yes! We simply have to get together sometime!” You sincerely would love to, but you low-key know it probably ain’t happening. No malice, just realism, amirite?
In Ali’s latest effort to establish a symbiotic, mutual accountability type relationship, she struck gold. Writing prompts: the difference between starting from scratch and having some good bones to work with.

We had abstractly discussed it a bit on the night of my birthday, but we were both drinking gin, and I had sort of forgot the conversation had transpired until she texted me the following Monday to suggest that we try to find a list of prompts and work from it together. After searching for some time, it became clear that it would be harder to find the perfect list than we had anticipated. Well, what if we were to come up with our own list? It took some blood, sweat, tears, and ignoring my kids, but by that selfsame night, when we combined our lists, we had managed to scrape up 115 Prompts for Lifestyle Bloggers. Apparently, that’s almost a year’s worth of two-a-week posts ( I mean, I didn’t do the math but Ali seems the trustworthy sort).
Boom. Writer’s block: solved.

Well, without further ado, here are our 115 moderately interesting topics for the lifestyle blogger:

  • Recent purchase review
  • A day in snapshots/a day in the life with pictures
  • Try and review a current trend
  • Create and share a playlist for any occasion
  • Book review
  • Five polyvore outfits
  • 10 Gifts for a _________ fan
  • Try three different mascaras and review
  • Share your skill (tips)
  • Letter to teenage self
  • Go-to weeknight dinner recipe
  • Test and review cheap wines
  • A few favorite apps
  • Who you follow on Instagram
  • Tips for the recently engaged
  • Ikea Rast styling
  • Movie Review
  • Experience with religion (or lack thereof)
  • Live blog a TV event
  • Go screen free for an entire day (or as much as reasonably possible) and then blog about it
  • Rank season finales of Game of Thrones
  • Girls Night Out ideas
  • Spend a week learning a language you’ve never spoken before
  • The five worst kinds of facebook posts
  • Tried and true hacks (beauty, organizational, etc)
  • Your Meyers Briggs type and what you believe about it
  • 10 great books for [age group]
  • Great couples/group Halloween costumes
  • Review a “classic” book that you never read
  • TBT old facebook statuses/tweets/pictures/etc that are mildly embarrassing
  • Dream vacation (with real research)
  • X Amount of things that [profession] would like you to know
  • Letter to a bully from school
  • Album review
  • Learn about a badass woman who is not well known and write a report
  • Raid Your Closet post with pictures
  • The best and worst thing that happened this week
  • Create an Instagram challenge
  • Five websites that you spend the most time on
  • Write a poem
  • Unwinding routine
  • Funny twitter/tumblr post listicle
  • Pop Culture rant about something you don’t get
  • Spring Cleaning tips
  • Fun party games (no board required)
  • Least favorite character from a beloved show/movie/book
  • Vegan/vegetarian for a week
  • Try something new beauty-wise
  • Stuff you’re still hanging onto for nostalgia’s sake
  • Stocking stuffer ideas
  • First time customer review for a local business
  • 10 most attractive celebrities
  • Opinion on a controversial topic
  • Try to learn a new skill and document it
  • Favorite local business
  • Ten things you do when you’re alone
  • Holiday traditions in your family/important family traditions
  • Getting started in your hobby
  • Story of why you started blogging and meaning behind your name
  • Ten things about me
  • Travel bucket list
  • Favorite holiday and why
  • Me time/self care activities
  • Pics & writeup from a trip
  • Favorite piece of clothing
  • Tour of your bookshelf
  • Ten things I’m grateful for right now
  • Animated tv or movie characters you had a crush on
  • Introduce your family/what family means
  • Favorite spot in the house & why
  • Something you once hated and now like
  • Book you read as a teen that you still think about
  • Get your tarot read and write about it, even if you’re a huge skeptic
  • A bad habit you want to break this year
  • What you wish someone had told you before your wedding/planning your wedding
  • Describe a dream in full detail
  • Where do you see yourself in five years
  • Favorite bar/restaurant/coffee shop
  • DIY fail/diy mistakes
  • Favorite board game
  • What do you do when you host a gathering?
  • Favorite seasonal date
  • Favorite beauty product & why
  • Getting inspired when you’re in a rut
  • Products you swear by (any genre)
  • Favorite dessert plus recipe (or link to a recipe)
  • Favorite things about spring
  • Favorite things about summer
  • Favorite things about fall
  • Favorite things about winter
  • A regret
  • Have someone do a guest post
  • Do a 30 day challenge
  • Long term project you’re working on
  • Health PSA
  • Behind the scenes of your blog
  • Post about your take on the state of your current industry (blogging/parenting/writing; cooking/blogging/writing)
  • Tattoo story/tattoos you want to get
  • Create and share blogging mood board (or writing mood board for a specific writing project)
  • Freebie: we get to blog about this challenge that we’re doing
  • Late 20s vs Early 20s
  • Cocktail recipe
  • Holiday stress
  • Gift selecting process (not like things to buy but how you decide what to buy)
  • Share experiences/tips/reflect on current position
  • Relationship advice
  • Hardest thing you and SO went through together and how your relationship seemed stronger after
  • Mood playlist
  • Stress relief/dealing with stress/leaving stress behind
  • Bringing yourself out of a funk
  • Ways to bond with your SO
  • A car related memory
  • A sports (playing or watching) memory
  • Something from a long time ago that still pisses you off but isn’t that serious and you should probably let it go
  • Weird perfumes that you’d buy if they existed (like unusual smells that you love)

Pin it, share it, play along! And tell us what your favorite blog prompts are.

Turning Two to the Power of Five, Minus Six, Plus Four

You can stop trying to do the math. Just as this post is bound to be, it is just a long winded way of saying that I’m turning thirty. Tomorrow.
So what? you’re thinking. People age every day. It’s better than the alternative.  Age is just a number. You’re only as old as you feel. Blah blah more cliches blah.
You’re not wrong. I’ve been aging for the last 10, 597 days, so I am reasonably well-versed in the process. A good number of those days have been difficult, but many more of them have been fun, or comfortable, or beautiful.
For reasons that I can’t quite place, thirty is especially hard for me to come to terms with.
Half a lifetime ago, I was a high school freshman, writing in my diary about turning fifteen and all of the hopes and dreams that were brought about by it. I wrote about switching out of my honors math class and how embarrassed I was because I had never struggled in a class in earnest before. I was hopeful that the new class would bring up my GPA. I wrote about I had just broken up with my boyfriend of three weeks. I didn’t say why, but I remember a huge part of it was that I had developed feelings for his best friend (as I did for most boys who I spent any amount of time with in my adolescent years) and I thrived off the drama of it all. It was okay though, I had assured my Microsoft Word document, written in purple Comic Sans. I had already set my sights on someone else. I didn’t say who, because I was vaguebooking before it was even a thing. I did note that I was wondering if he liked me back, presumably because it was the only question I felt was unanswered. Everything else seemed answered. Known.
I could fill an entire encyclopedia volume with the things I didn’t know on the day I turned fifteen. I didn’t know that mystery boy would not reciprocate my feelings. I didn’t know that I would hate the new math class so much that I would just stop going, choosing instead to wander the halls with a few friends I had recently made. I didn’t know that I would fail the class, and subsequently give up on my grades. I didn’t know that I was already surrounded by some of the most important people I would ever meet.
I mean, how was I to know that the quiet girl who sat next to me in World History and listened to me wax poetic about my sordid “love” life and sometimes talked about weird things like Dodge Neons and black and white TVs would one day become godmother to my firstborn.?
Or that the cute best friend of that ex-boyfriend, who wore his hat backwards and reminded me of Shawn Hunter, would be the person who awaited me as I walked down the aisle, nearly half a lifetime later?
Or that the same ex-boyfriend’s little sister would become one of my dearest friends, help me find my first apartment, and do a reading at my wedding?
Who would have thought that, seven years after I wrote that diary entry, my middle school nemesis-turned best friend would be happily in love with one of the guys who I used to skip algebra 1 with?
Or that a guy I had never spoken to in my French class, who I would eventually coerce into taking me to his junior prom, would later introduce me to the first person I ever fell in love with? Or that, soon after, he would begin dating one of my best friends and that they would stay together forever and ever, amen?
And really, I could not have possibly imagined that the random friend of a friend that I had hung out with once after school would be the first boy to break my heart, the person who saved my life when I believed it wasn’t worth saving.
Back then, I didn’t know  that any of these people would leave a lasting mark on me.
Fifteen

Looking back though the second half of my timeline and all of the things that have changed makes me equal parts nervous and curious about all of the things I still don’t know. What am I going to look back on five, ten, fifteen, or even thirty years from now and say “Wow. I never would have guessed.”?
But as my favorite philosopher once said, “The consequences of our actions are always so complicated, so diverse, that predicting the future is a very difficult business indeed.”
I don’t have any math classes or ex boyfriend’s relations to set the course of my life on a different path as I write this equivalent of a diary entry on the eve of my thirtieth birthday, but I would like to think that my future holds a few more certainties than my teenage self’s did. I guess there’s only one way to find out.

The Gray

Like most little kids, I liked to collect things. Beanie Babies, Pokemon Cards, and for some inexplicable reason, Starburst wrappers, were among the list of items that I sought out, hoarded, and eventually grew bored with. The one thing that I never lost interest in collecting is journals. I am a girl who loves the sound of my own voice…the writing one, that is; I’m not terribly fond of how I sound in recordings. And since I’m not as creative as I like to pretend I am, I went through a phase where my favorite kind of journal was the fill-in-the-blank kind. Sort of like the precursor to Myspace surveys, I suppose.
Anyway, I have this oddly specific memory of one of those journals that I had when I was in the fourth grade that I had received as a hand-me-down from my teenage neighbor across the street in a box of books that she had outgrown.
Once I overcame my mild horror that someone would give away something as precious as a diary (like, what if you wanted to go back and read it someday? No? Just me?), I dove right in and began answering the prompts. When I got to the question “What is your least favorite color? Why?”, my poetic nine year old self spent a lot of time thinking it through. Orange? I wasn’t crazy about orange. But it was still a fun color, and besides, orange reminded me of my favorite band, Hanson. Black? No. Even if  I didn’t know it at the time, I had a goth kid heart. Black was beautiful. Yellow? It could definitely be too much sometimes, but it was such a happy color and I was a happy kid (in spite of aforementioned goth heart). I decided to go with gray. My reasoning was not well-articulated, but it boiled down to the fact that I believed gray kind of obscured the beauty of other colors. I was satisfied with my deep understanding of the world, and didn’t give it much thought beyond that.

When I first began working on my novel, I started jotting down ideas and memories that I could potentially incorporate into the story in a note on my phone. This memory of decrying the color gray as dreary and boring emerged while I was purging my closet a few months ago and I was momentarily amused at how much I had grown to love the color. I grabbed my phone and logged it, because I thought it was an interesting idea to explore. I have not yet hit the point in the book where I have had the chance to use it, but I did flesh out the idea a little bit more. And this is what I came up with.

Sometimes, the quiet gray comes creeping in, dimming all the other colors in its wake. And it can be sad, hopeless even, being thrust so suddenly into a world devoid of color. But if you can get past that, you will begin to see that the gray possesses a beauty all its own. You just have to remember to look for it. 

It may come off a bit weird without the context of the book, but so be it.

We received some ‘punch to the gut’ kinda news this weekend. We learned that this house that we’re renting, that we have made our own and grown to love, despite the weird ugly green counter tops and 70’s wood paneling and the terrible acoustics, is not going to be our home for much longer. Our landlord, who has always expressed that this was his favorite of his rental properties, has decided that he wants to live here. Obviously, this is his decision and such is the risk that someone assumes when they choose to rent, but it was devastating nonetheless. I spent a lot of time alternating between feeling sorry for myself and desperately trying to keep myself from going over the edge and free-falling into despair, as is my instinct.

During the usual morning chaos yesterday, I asked my dear friend Alexa what the weather was like and learned that it was going to be pretty dismal all day. I decked my kids out in their rain coats and galoshes and went sprinting out the door. Getting the kids from the house to the car and back again is not often a leisurely process, with the omnipresent threat of tardiness hanging over my head. Add in the bleak weather aspect, and it becomes pretty frantic. But once I dragged them out the door and yanked my four year old’s hood on again and re-zipped my two year old’s coat, and prepared for the mad dash to the car, I turned around and faced the dreary, gray outside world. And I was struck dumb by how beautiful it was.
I took the long way home from my son’s school, so as to pass by one of my favorite spots in my neighborhood, a tree with a tire swing that sits right at the edge of the pond. I stopped my car, rolled down the window, and snapped a picture, because who knows how many more times I’m going to drive by that spot?
I chose an Instagram filter and tried to think of a caption that captured how I felt about the picture and also about my current situation. I may or may not have even googled “quote about gray skies”.  Nothing seemed right. After breakfast, I pulled out my phone to add eggs to my shopping list and when I opened my notes, I suddenly remembered my own musings on the color gray.

Things are a bit gray right now and it is easy to get lost in it. It’s easy to despair when it feels like the color is being drained from everything around me. But I’m trying to remember that the gray doesn’t actually remove the color. It just masks it for a little while. The color is still there. All of the good things in my life still exist and it doesn’t do me any good to let this particular gray make me forget that. And, once I started to look for the beauty in the gray, I realized that my husband and I are at our strongest as a unit when we’re feeling vulnerable as individuals. And we’ve started researching buying a home of our own, for the first time in our lives, which in turn, has made us examine our financial situation in earnest. It has also driven me to step outside of my role as the comforting friend, and seek comfort instead, which has been cathartic and a little enlightening. There is beauty both within this gray and on the other side of it and I look forward to finding more.

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