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."

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!

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?

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.

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...

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...

Picnics on Aisle Three

To start, this post is written out of love and compassion - something even I, as the parent of a special-needs child, have had to learn over the years. Because believe me, I've put my foot in my mouth and regretted certain actions I've taken in the past. And no matter how hard I try, no person, or parent for that matter, is perfect. This, I know to be true. And, I'm sorry!

Moving on to the point of this post... parent-shaming. Or in other words, adult bullying.

I'm writing this post in response to a photo I saw on Facebook recently, of two parents in public with leashes on their children. A picture taken discreetly by a former special education teacher, of a family, that we, as a community of critics, knew nothing about - a picture that was swiftly removed with comments ranging from confusion, anger, and acceptance, to just plain ignorance. My heart hurt (and my blood boiled, I won't lie) for the family, for the "problematic parents" as they were called.

I can sympathize with this mother and father, because I undoubtedly get "parent-shamed" when I'm in public with my family. Or rather, when I'm "out" with my children. In fact, probably more times than I would like, or even care to know? Points of possible criticism: why does that mother "demand" to hold her son's hand so tightly, why can't that mother "quiet" her child who's chirping like a bird on the floor of the grocery store, why can't that mother "keep" shoes on her child's feet, why can't that mother just "relax" and chill out? (The list goes on, I know.) And my response would be...

Because I do hear your questions, spoken or not (they're in my head, too), and I also see your stares (even when my eyes are fixed and I'm not looking), oh, and funny enough, I only wish for harmony and ease - just like you...

PLEASE DON'T JUDGE!

Don't speculate, gawk, or let hurtful comments slip. And don't, just please don't, take pictures! Instead, offer to help - if you can? Or, just keep moving, go about your day. Walk away thankful your circumstance is better, and try for just a moment, if you're still perplexed, to be empathetic.

Because as worn out as the phrase may be, it does hold strong - walk a day in another man's shoes.

In closing, I realize the person who posted this picture was not trying to be overtly malicious. It was a hasty decision borne of confusion, that as she said, "opened a can of worms." To take it a step further, I appreciate her choice to both help and teach children with special-needs, but even though she "gets it 100%" and understands the long list of adverse behaviors associated with autism, in particular, she doesn't live with it, day in and out.

And while I have the utmost admiration for those individuals that devote their professional lives to the cause of betterment - teachers, therapists, doctors - the parents, oftentimes, don't have the same technical wherewithal to prosper in stressful situations. More often than not, we have to lead with the heart alone, and sometimes, as "disrespectful and demoralizing" as it may appear, there are leashes involved - or in our case, random picnics on aisle three.

I hope to open one person's eyes, or give strength to one family struggling... YOU ARE NOT ALONE!

Positive School Climate, FAIL!

Over the last eight years, like so many people around the world, I've shared details of my life via social media: the joys and struggles, the victories and frustration, the fear and grief. Today, I post yet again, but begin by saying, "PLEASE!"

PLEASE READ THIS POST, AND SHARE IT!

As many of you know, a lot of my posts center around my children. In particular, my love and worry for Aksel, my seven-year-old son, who is autistic.

So, when a friend shared this photo (with me in private recently, asking for help) of her twelve-year-old son's back - a child who lives with autism in Charleston, SC - a kid, like yours or mine, who attends (an at-this-point unnamed) middle school within the Charleston County School District (CCSD) - I felt compelled to write, to share their story. (With her permission, of course.)

Because BULLYING is unacceptable, and the indifference (shown by school officials), justifying his cruel treatment, needs to end now! Full stop!

The boy pictured, who for the sake of privacy shall remain anonymous, was attacked at school on Friday (May 26, 2017) afternoon by a group of nine peers. They pushed him down, hit him repeatedly, and called him an "autistic retard."

In an effort to defend himself, the child attempted to push the ringleader off of him. He, the child pictured, was then "caught" by a superior and sent to the principal's office.

There, the child pleaded his case to no avail, and was sent back to his classroom. At no point, was his mother notified?! Yet, the child is regularly made to call his mother when he "speaks out of turn," which according to CCSD discipline standards is an infraction. Physical assault and bullying, on the other hand, are considered Level 3 offenses, worthy of expulsion. But still, no contact was made, and sadly the offenders were left unpunished. (Note, the child's mother only discovered the injuries a full day later, when they went to the beach.)

Now might I add, this isn't an isolated incident!

The child's mother has, on three separate occasions, over the course of the last three months, reached out to administrators to report offenses - of which include, similar physical mistreatment and name-calling.

Crickets...

And really, she's not asking for much. Nothing you, or I, wouldn't demand for our children. She just wants her son "to be able to go to school without being bullied." And furthermore, she wants him "to be taken seriously when he brings concerns to administration."

So I implore you, as a community of parents, grandparents, and professionals, to take a long look at this photo, and think.

Then, to take it one step further, I beg you to imagine...

Imagine how YOU would feel if this was YOUR child - a boy, scared to go to school, let down by a system that won't, or at least hasn't yet, protected him from harm and ridicule?

I won't, while I have breath in my body, let my child fall prey to this type of injustice. And she shouldn't have to either!

That said, there needs to be a change in our society, a fundamental re-teaching of kindness. And it starts at home!

With regard to the Charleston County School District, in the handling of this particular matter, your "test" score needs improvement. "Positive school climate," FAIL!

(I will keep you updated as this story develops. As of now, the mother has filed a police report, and has called for an emergency review of his IEP. The child will also not attend school until the issue is positively dealt with.)

Kindness is the Best!

Nearly six years ago, I wrote:

I'm still coming to terms with all of it.

All of it being autism. And if I'm being honest, I'm afraid. I'm scared of the forever of this disorder. 

I get anxious when I let myself worry about Aksel's future. When I ask will he questions. Like:

Will he assimilate?

Will he have friends?

Will he attend normal kindergarten classes?

Now fast forward to present day, and here's my "memory" from a year ago - Aksel in kindergarten with a friend!

Moral of this post, goals are great, hard work is hard, but kindness is the best!

This photo, to me, is everything that anyone's journey should be about... understanding, acceptance, and love!

I wouldn't change a thing...

Support, Love, and Baby Cuddles

Let me preface this post by saying, I couldn't do it without my husband. Any of it! He's patient, hands-on, and always willing to accept a challenge. That said...

When my second son, Alistair, was born (in July of 2013), like any mother transitioning from one child to two, I felt anxiety - to make certain my boys both got the love they needed, to establish a healthy new routine, and in our particular circumstance, to minimize the effects of and safeguard Aksel from the many changes taking place.

Change for most children causes stress, but for a child on the autism spectrum, it can be devastating. And at three-and-a-half years old, on the brink of a language breakthrough (Aksel was just starting to talk), I was so worried he'd regress. I was scared he'd retreat back into his own, quiet little world.

Oh, and did I mention that I probably over-coddled Aksel? In natural response, of course, to both my grief and guilt (because I was still in the phase of thinking I had caused Aksel's autism, or that there was something I could have done differently to prevent his diagnosis). So, to say that Aksel was, at the time of Alistair's birth, a momma's boy, would have been a true understatement!

There's no questioning the fact though, a newborn needs their mother to survive. And I needed to get to know him, too.

So, for two lovely weeks (albeit torn), we were in isolation, Alistair and I, gently getting to know one another. All the while, my husband, Mark, fielded the outbursts of change, making certain to both delicately reassure and comfort, Aksel. But as fate would have it, due to a protein allergy, I was unable to successfully nurse Alistair. And I guess you could say, as bad as it might sound, that it lessened the pressure I felt to be a perfect mother - to two very different boys. I could now divide my time.

Point of it all, during this tricky time of transition (in other words, hormonal imbalance, failed-attempts, and lessons learned), my husband was ever-constant in his support, love, and baby cuddles. And for all my worry about regression, it was minimal, at best. I can never thank him enough!

Decorations, Bright Lights, Balloons.

Oftentimes, 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, I look forward to celebrations like Halloween or Christmas or birthday parties. Situations where there's an aesthetic. Decorations, bright colors, balloons... those things bring me immediate joy.

But it doesn't last. Trees come down, birthdays pass, balloons pop...

In some ways the rigors of autism, by that I mean the daily intensive ABA/therapy sessions in my home, the behaviors that make social outings difficult (ie sensory issues), my fear that lives constantly at the surface of every situation (because of said sensory issues and behaviors I can't control), the anxiety that exists each waking minute... these factors have (I think) permanently affected me.

For instance, Aksel kicks and screams a lot. And usually, his brother is the target of his aggression. So aside from physically having to safeguard Alistair at all times, I worry constantly about his emotional wellbeing and development. Not to mention, I feel a lot of guilt for Alistair. I worry that I'm not giving him enough. At the end of each long day, I feel so depleted, tired, and confused.

I mean, it's great having a dedicated team of therapists (almost ten to be exact) who love Aksel, and our family too, but it's truly overwhelming as a mother (as a TYPE A mother) when each one gives homework. Things for us to continually work on.

The (never-ending) list depresses me...

But these feelings aside, at the start of a new year, I'd really like to work on addressing these issues and feelings.

Because I need a little fun in my life.

Thank you for reading, and Happy New Year!

Even When I've Only Got Brown

(I originally wrote this post a year or so ago, but never published it. The struggle is still relevant though.)

Do you ever feel like you're losing yourself?  That your spirit, or say joie de vivre is starting to slip away?  Like maybe you're... seeping, blending, blurring into the foreground of your life's messy painting?

Phew... glad I got that out!

If you answered yes to this question, then let me tell you, you are not alone.  I've been there, too.

Unable to smile, laugh, socialize.  In my case, think about anything but autism.  And how, better yet, I can't control it.

No. Matter. What. I. Do.

I suppose you could say we all lose ourselves a little when motherhood and wifedom come to pass.  We sacrifice, because it comes natural.  Because there's no other choice we'd rather make.  But where does the line of sacrifice become unhealthy? 

Because that's where it lives sometimes for me... 

In a dark place of imbalance.

But you know what?  I want more light.  And brightness.  Even when I've only got brown.  So, I'm pushing myself to see things different.  To be, as corny as it might read, the best person I can. 

The best mother to the quietest boy.

And I just want you all to know that your sweet notes and kind words, if I haven't already said it, or responded personally, mean so much to me.  They really do!  For so long now, I've been holed up.  Alone in my head, grieving for my child.  For again, what I can't control.  But such is life... and I want joy!  So, thank you!

A Reintroduction

Hello, friends!

It's been years since I posted anything. I guess you could say I've been deep in the throws of motherhood. In fact, since my last post, I've actually had another sweet little boy. His name is Alistair. He's 18-months-old, and delightful!

And Aksel, my deep special boy, is now five. (Wow, right?) And guess what, folks, he's talking! In fact, after three years of intense therapy, he's thriving. But it hasn't been without heartache and tears. And lots of sweat, too. Autism is no joke.

Anyhow, I'm back. I need to write. For the moment, however, it's just a "hello." A simple post to reintroduce myself. My forthcoming intentions aren't yet clear, I just need an honest place to get it all out.

Thank you for reading, and I hope you've all had a happy holiday season!

Gillian.xo

For Better, For Worse, Forever.

I've wanted to write for such a long, long time... but I haven't known what to say, or where to start?  There's so much in my life, and self, that's changed in the last year.  For better, for worse, forever.

For instance, I started to write last week.  Here's what I got:

It's said, on average, that the typical male thinks about sex every seven seconds.  Well, like the masses, the male mass that is, I think in seven second increments, too.  Only thing, I'm a woman.  And, I think about autism.  (Which speaking frank, is not a turn-on.)

For instance, every seven seconds or so I wonder if my child will speak? If he'll develop functioning language, and say simple things like:

Hello. Goodbye. Mommy.

To bring you up to speed, dear reader, it's been about a year since my child's autism diagnosis.  And I must say, that at any given point, on any given day, his disability is never far from the surface of my thoughts.  And it's heartbreaking, autism.

For one, my child doesn't look impaired.  You wouldn't know at first, second, or even third glance, that behind his bright eyes, there's a little boy desperate to communicate.  Unable to communicate.

But I try to stay positive, to be proactive.  Full stop.

Now that's pretty heavy, right?

And that's what's constant churning in my head. Baby talk. And babble. Or frankly, the sad, silent lack thereof.

But my child waved on Tuesday. And there's much to be said about the person I'm becoming. A woman who by all accounts has never, until just recently, enjoyed appreciated revered the simple things.

I mean not really, that is. Not truly.

Because I now proudly revere the things I thought I'd always overlook.

Like my child waving, for instance. Talk about joy!

Bright eyes himself.  Aksel, 2 1/2 years.

Tonight was a start, in sharing again. Thank you for reading.

She Whispered, "Write."

I suppose you could say I follow my instincts.  My mother always told me to listen to my inner voice, to trust my intuition.  And I have wholeheartedly since childhood.  Or since I was perceptive enough to understand my inner self.  That I actually had one, that is.

She also told me to "never leave a drink unattended, experiment with ouija boards, or dabble in dungeons and dragons," my mother.

Pretty random, right?

But the point of all this talk leads simply to the fact that my inner voice was telling me I needed to make time for myself, to stop over-analyzing our situation, primarily Aksel's autism, and to take active control of my wellbeing.

Because at Christmas, I was a mess... a sobbing, contemplative mess.

So, I did take control.  Or have, rather.  And resulting, it's been two plus months since I've written one creative word.

Don't misunderstand though, it's not for want, or love of writing, that I stopped, it's just because my person, my inner voice said, "rest."

But today, she whispered, "write."  Out of nowhere.

So, I am.

And I respect her, my inner voice.  Because she's comprised of all the women before me.  (More on this later.)

All said, and two months later, I'm happy again!  Not to mention, 10 pounds lighter.  And my mind, most important, is alive.

Oh, and Aksel's beginning to talk, saying simple words like "apple" and "hat."  Ten weeks ago, I was afraid he never would!

By the way, we love his team of therapists!  They're incredible!

And my marriage, despite the challenges in past months, is stronger than ever... most of the time.

We actually believe that autism is a blessing... now.

I'm just happy to be writing again!

PS - I really appreciate the notes and emails I've received over the last few weeks.  And despite my silence, they've helped so much!  

Living Life in 3D

I admit, I've been...[in a rut]...lately.

Really since Aksel's diagnosis, this past summer.

But it's time now for me to move forward and accept the challenge that is autism, to take active control of my health, both my physical and mental wellbeing, because life isn't easy under the best of circumstances.  And I want, in particular, to feel clear-minded, not weighted down with negativity or sadness.  I need to be confident ~ that much stronger for my child and his developmental differences. 

So, I choose to no longer feel:

Depressed.  Defeated.  Despondent.

I guess you could say I've been living life in 3D.  Which, as it turns out, is not all it's cracked up to be.  So, don't believe the hype!

(Or pay $16 for a ticket!)

But really, I'm making positive changes.

For my child.

Because I love him more than anything!  And, I want always to be his strongest advocate. 

Who knows, moving forward, he may need someone to speak for him, if he can not?

About 25% of people with an autism spectrum disorder (ASD) could be considered nonverbal... 

And I want, unquestionably, to be that person, to be prepared to accept and face the challenges, however they unfold?

For my husband.

Because he's my partner, I love him, and we're going through this journey together.  It's not any easier pretending I'm alright. 

I want to be strong for him, too.  Truly strong.

And lastly, I'm making changes for myself...

Because, it's not selfish to want to be happy in my own skin, to no longer feel anxious or overwhelmed.

But with all this talk of change and resolution, I don't personally want, at this point in the process, to take a pill to solve my problems. And that's not saying I'm against medicinally treating my symptoms of depression or anxiety.  In fact, I took Lexapro for nearly a year after giving birth to Aksel.  But in some strange way, this circumstance, autism, translates differently in my mind to that of postpartum depression.  For instance, it's never going away.  My child will always be autistic, and I'll always be, as his parent, striving to cope with the effects.  So, I can't, or don't want, rather, to seek out a temporary fix for a lifelong challenge.  Instead, I want to delve deep and truly find my inner strength.

Organically.

Naturally.

So I'm choosing, at this stage in the game, exercise as an outlet to alleviate my stress, to help me better understand my emotions.

That, coupled with a healthy dose of writing, and a more concerted effort at communication (with my husband) should help to brighten my outlook.  (It has in past weeks.)  If though, I observe no real change of mood in say three months time, I will contact my doctor for alternative options.

I realize it's okay to feel weak.  I just don't want it, the negativity, to be all-consuming anymore.

I want to embrace the positive.  For example, Aksel now hugs!

PS - Many thanks for all of your reassuring, sweet comments. They've really helped in past weeks!  Much love to you and yours ~ XO!

The {Momentary} Victor

Over the last few weeks, blogging's been low on my list of priorities. 

And I could blame my absence on the holidays, for having grandparents in town, or ya da ya da ya...

But, it just wouldn't be the truth.  

And there's really no point in pretending.  At least not here.

I mean, this is my space for truth and expression, for honesty no matter the pain... or humiliation.

So on that note, where do I begin (embarrassing myself)?  

For starters, I'm struggling to find my inner strength.  

I really am. 

It's like autism has me by the collar tight, and I'm fighting to breathe new life, new thoughts and/or ideas.  I just feel so one note...

But nothing means more though.  There's nothing weighing on my mind more great than autism.  (Will there ever be?)  And, I feel alone:  detached from myself, my family and friends, my husband...

Plus, I'm anxious.  Not to mention, hypersensitive.  Oh, and fun, what's that?

I only know the time we'll wrestle is indefinite.  Autism'll always have me pinned, because my weakness is my child.  And I hear you all loud and clear, shouting from the stands, "Be strong, Gillian.  Don't be afraid.  This doesn't define Aksel.  You're doing the right thing."

Yet, I can't look you in the eye for fear of breaking down.  For being weak, not in control.  Can you make my child speak?  Please.

It's just that at this stage in the game, autism is the victor.

So that's why I haven't been writing...

PS - I promise tomorrow's Wordless post will be upbeat and positive.

PPS - Despite my worry, which as you know I can't seem to control, Aksel's making lots of progress.

Autism as a Teenager

So much of my life now is centered around autism.  And I'm sorry for it.  I don't mean to be negative, sound negative, or read negative...

I really do want to post about fashion.

Or politics.

Or, films.  (Because I love these topics!)

But, it's just been a terribly challenging time for me.  For my life...

And today, was especially hard.  As mother to an autistic child, I can say it was truly sobering.  (And, anxiety-evoking!)

I walked out of the hospital, the local medical university, with my husband and child, after a routine appointment this morning, to see a dark-haired teenage boy walking in our direction.  He was no more than fourteen, the boy.  And his parents, who were struggling to keep up with him, lovingly called him Speedy.

Under normal (parenting) circumstances this might be no big deal, but he was different.  He was stimming!

Again, this may seem like no big deal, but to the parent of a stimming autistic toddler... it was heartbreaking!

DON'T KNOW WHAT STIMMING IS?  CLICK HERE.

It's like we saw what our child, Aksel, might be like as a 13-year-old with autism?  And, it scared us.

Because, for the first time, we saw autism as a teenager.

I mean, our near two-year-old is really cute flapping his hands now.

Will it be cute when he's in high school though?

I, for one, don't want my child to be picked on for his differences.

I don't know if I'll have the fortitude of character to withhold expressing my emotions?

Because he'll always be my baby!  And because, I was picked on as a kid for being just a little different.

READ ANOTHER MOTHER'S STORY WITH AUTISM.

On a last closing note, Aksel's been excelling in therapy.  And despite today's encounter, my spirits are (and have been) relatively high.

I mean, the progress my boy's made in three-and-a-half months is incredible!  And I believe, early intervention is key!

Happy Holidays!

A Pool of Positive

If I don't write, I feel like my head'll explode.  And I've felt this way since I was a young girl.

Like I needed to purge my thoughts.  My descriptions of interesting places, and the people therein.   My observations about life.

And when I say purge, I mean often.  (Write often, that is.)

For example, during my college years, I always carried paper and a pen in my purse, because I had to write.  To be more specific, a spiral-bound journal (adorned with relevant time-period clippings), a reliable felt-tip pen (preferably in black), and Wite-Out (because I was particular, go figure, about my penmanship).

From time to time, I even had a voice recorder on hand.

But to my point, I've been feeling overwhelmed lately, and I'm struggling to organize my thoughts, my heavy writer's mind.

And with everything going on, my mother's recent health tests (she's undergoing an endoscopic procedure on Monday), Aksel's autism diagnosis, and the in-between stuff like housecleaning, laundry, and dentist appointments, I've been in a serious spin.

Throw in the disability/Tefra/Medicaid application-process and multiple weekly in-home therapy sessions, and I could just cry.

That all said, I know everything I've written recently has been negative (and I'm sorry for it), but it's just where I'm swimming.  I'm treading water in a pool of positive-thinking, very near to the deep end of depression.  And I need to make time to exercise, to take care of myself, because I'm feeling spread thin.

On a positive closing note, Aksel's been making tremendous strides in therapy, and I have much, in the way of good news, to soon share.

As always, thanks for reading.  And, happy Friday!

A Heavy Mind

My mind feels heavy, that's what I've come to after much thought.

I mean, I want to post about cursory things like how much I love the chevron pattern, or how I fancy peppermints on pies.

But, I can't.  My mind is heavy.

And it's 'cause of the economy and autism.

For one, it's hard being a small-business owner.  I don't ever talk about it, but it is.  And a depression doesn't make things easier!

Throw in the people that work for you, that are effected daily by the economy, that you truly care about, and want only good things for...

No pressure, right?

Wrong.

It's just hard to keep people's spirits up when everything is down.

On a different note, there's also much I haven't shared about the autism journey.  For one, my relationship & how it's changing.  How we're coping at times differently with special needs.  How it hasn't been easy, the adjustment.

But I'll save that for another post.  Just know, I'm about to go there.

Right now, I'm thankful for Jane Austen film adaptations.

(Because I'm going to light a candle and watch Emma.)

No.  Well, yes.  But, really...

I'm thankful for my happy sleeping baby, my man I don't always agree with but love, and our warm, little home with flowers in the kitchen.

What more do I need?  (Besides a vote!)