Tuesday, July 11, 2017

In Shining Armor

Aksel is physically maturing by the day, and I can see it with my eyes. He's growing strong and tall, and dark and handsome. But if I'm honest, he's growing away from me, too. And I can feel it in my heart. In the deep, cherished chamber that can only be described as motherhood.

That said, I've felt an unexplained sadness of late... I miss my child, even though he's near and never far away.

And I've been grappling with this emotion for a while, the want to better know Aksel. Specifically, how he feels, his favorites, apart from my assumptions, his ideas, that are still so heavily guarded by the words, that after all these years, are nevertheless locked away - lonely, elusive, and fleeting.

Damn, cement tower! Damn, autism! I just want the key...

I want to know and rescue his precious thoughts. At seven-years-old... At eight-years-old... At nine-years-old... I want to be his mom in shining armor. Is that so wrong?

Because, I know I'll never get these days back. And I realize I may, sadly, never get answers to all the many tired questions I (annoyingly) ask aloud (almost) every hour: Aksel, are you happy? Are you bored? What are you thinking about?

As his mother, I cherish the moments when he wants to engage, apart from the perfunctory exchanges (i.e. I'm hungry, I'm thirsty, I need help). But I cherish those too, because they fill a space. Because I know he's here, he's with us.

It's just summer, and as strange as this might sound, I feel pressured by the time we have to be with each other. (Of which, I'm equally grateful for.) I want memories, and laughter, and dinner-table conversations. But I don't want to force them. Or rather, I'm helpless, and I can't even force them. (I can't even get my child to sit at the table.) But the clock's still ticking...

In closing, I think a lot of these feelings are coming to the surface now, because of Alistair, my fearless four-year-old that wakes with a thousand bright thoughts to share each morning. And I'm amazed by all that he so easily and freely gives! I just also realize, comparatively-speaking, all the many dreams and flights o' fancy, I've never heard from Aksel.

But I find comfort in looking for them in his eyes, and hearing them through his music, yet I still miss my child...

Tuesday, July 4, 2017

A Perfect Holiday Drink

If you'd like a little Cocktail, and I don't mean Tom Cruise, or maybe I do... he was Born on the Fourth of July... this drink's perfetto!

So I say, drink an Americano today!

Originally served in Gaspare Campari's Caffe, the Americano dates back to 1860's Milan.  Interestingly, the aperitif garnered its name as compliment to all the many Americans that enjoyed its refreshing, slightly bitter taste.  

As note, if you've never tried Campari, it's earthy and herbacious to say the least.  I like to describe the spirit as a stomach opener, as it stirs the digestive juices and encourages one's appetite.  

So, this is the perfect drink starter to a day of good eats and laughs.

As a bit of trivial knowledge, the Americano was also the first drink ordered by James Bond in the premiere novel of Ian Fleming's series, Casino Royale.  Don't you want one now?


1 oz. Campari
1 oz. Sweet Vermouth
Club Soda
A Lemon Twist or Orange Slice

I also like to add a generous splash of this sparkling beverage!  

And, I prefer a highball glass instead an old fashioned.

Enjoy your Fourth of July, and please be safe! 

Monday, July 3, 2017

When Words Fail

Music has enriched Aksel's life so very, very much. Before he spoke, he sang. Or in simpler terms, before I "understood" his words, I "recognized" his music. (See videos below.) And oh, was it joyous to hear?! Because there was such a long, lonely stretch of time when I didn't think Aksel would talk, and I was heartbroken! 

But music is the universal language, right? Funny, I never knew at 21, when I advocated for "Save the Music" (as a platform in Miss South Carolina), and visited countless classrooms in and around my hometown, attesting passionately to its "universality" - that music, would actually come to save me (and my son) - that I would come to truly live and believe in its power? (Aside from the instantaneous joy and gratification I felt in "making" music.)

Because music has changed my life, and my child's life, too!

But really, Aksel lives and breathes for music. From the moment he wakes, till the minute he rests, my child is forever humming, drumming (on his belly), and strumming. And I'm not exaggerating!

In fact, Aksel rhythmically "drums" on his belly so much, that over the years, he's incurred dark callouses and bruising on both sides. And as concerned parents, we've tried, with varying success, to "replace" the behavior with real instruments - bongos, shakers, tambourines - but Aksel still prefers to truly "feel" his music. Thankfully, the self-injurious behavior has diminished some with age and maturity, but it's still a point of discussion at our well-check appointments and IEP meetings.

The true impetus for this post though, is Aksel's recent sophistication and knowledge of music. At seven-years-old, he's taken his appreciation to a whole new level, and as his mother, I'm amazed!

In the last few weeks, for example, here's a list of some of his recognitions/favorites:

  • "Mom, it's Take Five! It's jazz!"
  • Yesterday at Seabrook, "It's Jackson 5!"
  • "Tears for Fears, everybody wants to rule the world!"
  • "Watermelon Man, it's my song!"
  • Listening to Andrea Boccelli on PBS, "It's opera!"
  • "Mom, please find Anytime She Goes Away (Ain't No Sunshine) on YouTube."
  • "Careless Whisper, I need Careless Whisper."

It's just a beautiful kind of life, and on that "note," literally, I wouldn't change a thing. "When words fail, music speaks."

Sunday, July 2, 2017

182 Days Ago

Six months ago today, I embarked on a personal "wellness" journey. 182 days ago, I changed my diet, outlook, and perspective - on a quest for better health and confidence. Something I sorely lacked after giving birth to two beautiful boys, and enduring the hardest two years of my life (more on that soon).

That said, half a year later, the weight I set out to "lose" is gone, but more importantly, I've "gained" a sense of strength and mental fortitude I never knew possible?! The attitude of "I can, and I will," now directs my thoughts most days. And I'm never going back...

As a side note, it's hard for even me to see these side-by-side shots. It's sad, actually. And it's not so much from an external, superficial point-of-view, my emotional response. It's because I remember how trapped, and unhappy I felt in my own skin.

182 days ago, I made the best decision to put myself first - to focus on my health. And I'm a better wife, mother, and person for it!

Saturday, July 1, 2017

Sunshine Face

My second-born baby is about to turn four, and from the day he first arrived, he's brought immeasurable joy, laughter, and light to our family. His gentle way, and fierce personality could truly melt the coldest heart. That said, I could never imagine a life without Alistair Anton... the sweetest boy I've ever known! (I know, I know... I'm his mother, and I'm biased. But if you've met him...) 

To start, the name Alistair means "defender of man." And true to form, he exemplifies the name to a T. Our Alistair, or "Ali" as we call him, is both a protector and natural-born leader. At just three-years-old, of his own accord, he's wildly independent and always helping out. Whether it's corralling Aksel to "unplug" and play, assisting with troublesome shoes, or (always) reminding me to "drive safe" (after he's hugged, kissed, and "tap-tapped" my back four times), he never fails to take charge and just show love. SO MUCH LOVE! I only wish he'd (sometimes) let me help him, too!

So happy (almost) birthday, Alistair. My joyful joybug joyboy! Your face is that of sunshine and stars... 

Friday, June 30, 2017

A Big Pot of Loneliness

I speak for myself when writing, but I have a sneaking suspicion I'm not singular in feeling this way (because it seems, for me, to be a recurring, slow-moving battle I fight - one I so ever-delicately balance on the back-burner - yet, always return to shake)...

Loneliness. A great big pot of loneliness - with life smoldering, bubbling, burning - and feelings, heaped high on a pretty plate.

Aksel, 4 Months

Really, I guess, in simpler terms, one could analyze these words to mean that I feel overwhelmed. And tired. And stale.

Because oftentimes, I do.

Case in point, a few years back, I wrote:

"I feel very alone. Autism has changed me. Or really, to be fair, motherhood has changed me. I think I used to be more social. And fun, was something I easily had. Not so much anymore."

Now, please don't misinterpret, I do generally, for the most part, feel hopeful and happy. I just don't make, like most parents, enough time to truly "feed" my soul.

Instead, I spend my days "nourishing" others. Prompting children to "put" their clothes, to "keep" their clothes on, and to "stop" for the love of all sanity, peeing in the yard.

Bottom line, it's not easy being a parent. It's even harder trying to juggle it all: relationships, responsibilities, respite, and routine.

All said though, I'm thankful to be needed, and loved. (I'm also very thankful for the friend who just "dropped by" yesterday - who stirred my pot of "loneliness," with her unassuming loveliness, and bright, meaningful conversation.)

PS - I originally wrote this post in April 2017. I decided to "publish" it today, because I had my first child-free "break" (the first in nearly three years) a few days back. And to say I feel like a different person would be an understatement. I feel fresh, rejuvenated, and recharged! It really is important to "feed" your soul!

Thursday, June 29, 2017

Anymore + Evermore

You know what, I'm not going to "quiet" my kid anymore. And I'm not going to "pretend" anymore, for the sake of social norms, that my child doesn't, or isn't, feeling something he can't "appropriately" communicate (based off other people's comfort levels or skewed terms of acceptability). Because guess what, "normal" doesn't exist anymore. And it never did, actually. I'm just sad, and sorry, it took me so long to wake up. But here it is, I'm not in a "fog" anymore. And I'm happy to say, I'm not going to worry about "you" anymore. So, for the record:

  • My kid WILL scream when he's overwhelmed, tired, frustrated, excited, sad, angry, or indifferent.
  • My son WILL drop to the ground kicking for reasons unknown to both you and me.
  • My boy WILL make a scene to be seen, and "heard."

And I will not apologize anymore. Because, I am proud of him. For always, and evermore!

Moral of this post, and reminder to myself, respond intentionally.

Now, can I get any more photos of Aksel's face in just one post? And as a side note, I think, moving forward, he should take all of my pictures. What do you think?

Wednesday, June 28, 2017

The Root of the Problem

I have two boys: one on the autism spectrum, and the other neurotypical. On a near hourly basis, my neurotypical son (who is nearly four years old) indicates pain. "Mommy, I have a boo-boo. I need a Band-Aid. Let's go to the hospital." In Aksel's world (my seven year old with autism), by stark contrast, "pain" is felt and processed differently. Meaning, he rarely shows discomfort, or at the very least, he doesn't talk about it.

That said, I've always known that Aksel's tolerance and threshold for pain were great. Therefore, I'm acutely sensitive to his complaints - when, and if, I hear them. (If, being the operative word.)

So, when Aksel started scripting dental terms, and made mention of a "cavity" three weeks ago, I knew something was amiss. But sadly, my "realization" wasn't immediate. For as any busy mother, whose child isn't particularly forthright, or who has difficulty communicating, it took a little work to get to the root of the problem.

And in this particular case, the "root" was truly a nuisance!

Really though, upon inspection, Aksel had two visible cavities! And never once, despite considerable pain (one was an abscess), did he directly say, "Mom, my teeth hurt!" Instead, he sprinkled his "talk" with mystery words like "better" and "cavity."

But when he knew that I knew he was in pain, however, he was very open in vocalizing his discomfort (for example, see video below). He just had a hard time presenting the matter beforehand.

Now fixing the problem, that proved to be a whole other beast... Because like many children on the autism spectrum, Aksel does not like going to the dentist! For one, he's orally-defensive. He will not let you put your hands in, or near his mouth. Hence the reason his oral health is a problem to start. (That, coupled with a very limited, starch-heavy diet.) Because brushing teeth, for example, is a twice-a-day battle of the strong in our household. (I try to focus on the four quadrants of his mouth, making certain they each get "some" brush-action. But at 4'3" tall, and 63 pounds, he's just not as compliant as he once was. I mean, who wants their mother's hands in their mouth twice daily?)

Long story short, due to anxiety and resistance at the dentist's office, Aksel had to have his first "medical procedure" (complete with general anesthesia) last week. He had two cavities repaired, an abscess extracted, one pulpotomy, and a full cleaning. And might I say, he braved the experience like a real champ - far exceeding my expectations.

Now, from his cute perspective (he took most of these photos), here's Aksel's day at the surgery center. I just hope it's the last trip for a good, long while. But with two active boys, I highly doubt it...

I don't know who these guys are, but they were waiting too?
Aksel getting prepped.

Speaking with Aksel's anesthesiologist beforehand.

Daddy, looking a little worried.

A group selfie with Nurse Sheila.

Ready to go back with Nurse Karen.

Monday, June 26, 2017

Home House Sticky Call Me Maybe

Yesterday, for the first time ever, Aksel sat down, of his own free will, and wrote me a letter.

(This post and letter was originally written in April 2017.)

I drew lines on the page to help with his baseline orientation, because Aksel usually has a hard time visually attending to the paper. This occasion was different though, he was in it, and more importantly, he wanted to write. (As a side note, I never thought I'd write those last four words? Someone pinch me, please!)

Then, I left him to it, and finished loading the dishwasher - curious and hopeful, the whole time.

Here's what he wrote, my Faulkner-like little boy, expressing in his own perfect stream-of-consciousness, thoughts, I'll cherish for a good, long while:

"mom dad Aksel Ali light thought i Love You food dog chick sick sicky Bank high mail home house sticky call me maybe make bake story the end."

(I think Carly Rae Jepsen would appreciate the reference?)

In life, I'm learning, now more than ever, that there's little point rushing that which isn't ready, because "the race" is in my own head alone. And Aksel, for all that he knows, shows, and holds back, is resolutely determined, to run steady at his own pace. And as his mother, I've just got to be on my mark, with my toes on the line...

Thursday, June 22, 2017

Like the Calm after a Storm

When Aksel was 19-months-old, a few weeks prior to his official diagnoses (of autism and childhood apraxia of speech), I received his first speech and language evaluation. It was not good...

With the bold words "severe" and "significant" splashed on its pages (like that of a messy abstract painting), I cried. I bawled! I sobbed the whole drive home...

It was the ugliest, most gut-wrenching cry of my life - to date!

At one year and seven months old, Aksel's expressive language communication age score was that of an eight-month-old. In the area of receptive communication, he received an age equivalency score of twelve months.

And strange enough, after all these years, I somehow found this evaluation today. (I used to be really organized. Now, I'm just hanging by a thread!)

These three pages were so impacting though, especially now looking back, because it was, in late-August of 2011, that, for the first and only time, I "doubted" my child. And myself, as a mother too.

To be clear, I believed, prior to receiving these "sheets of paper," these calculated findings, that Aksel "understood" me. (Specifically, my language when talking to him.) And even though I felt concern and worry for his development (hence the testing, etc.), I took comfort in knowing that I "knew" my child. But these words, these "professional" words, put into question everything I held to be true about Aksel, and his capability.

After reading, and re-reading the jargon-filled pages... there were now limits. There were barriers. There was ground that could never be covered.

And honestly, looking back, I don't know for how long, I hesitated? But somewhere, at some point along the way, my inner-dialogue of doubt, grew quiet, and I trusted again - in both Aksel and myself. Like the calm after a storm.

And today, to see my seven-year-old flourishing, on par with his peers - adding fractions, reconfiguring trapezoids, spelling "America" - I know I needed to feel the fire and pain, to believe wholeheartedly in "us." To push. And nowadays, I take evaluations and tests with a grain of salt. They're no big deal. They're not a game-changer... for us.

I wouldn't change a thing...

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