Author Archives: momentsinmomvana

When grief shakes you into gratitude

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This week has been crazy.

Now, those of you close to me know that making a statement like that is akin to saying “the sky is blue”; my life has been some level of craziness for a couple of years now since I got the brilliant idea to buy a house and go back to school while raising an ASD kid on my own. Throw in fibro, a long-distance romance, work… you get the idea.

Spring semester started on Monday. But I missed my first three classes because Munchkin’s school was cancelled due to weather. I’ve just felt off-kilter ever since. I am my own slave driver sometimes (okay, most of the time), so I have been working all week at trying to tell myself to chill… but really I was walking a thin line between mindful awareness and just busy running, trying not to panic over feeling like I fell behind before the semester even started.

And then I opened Facebook.

Recently I haven’t been using social media nearly as much as usual. For the purposes of this post, the reasons aren’t important. But I just finished up replying to some professors and thought I’d scan the news. And that’s when I saw it.

Yesterday, a friend of mine lost her husband to cancer.

I met “Sadie” in high school. I always thought we sort of connected over our shared curly brown hair, and the fact that the two of us were some of the shortest girls in school. Sadie was actually slightly shorter than me, which is rare for me. Even though she was a year older, we had a couple of classes together. We reconnected on Facebook a couple years ago. I grinned when I saw her wedding pictures… “Jack” was a foot and a half taller than her! They were a totally adorable couple. I’ve watched with joy as they started a business together, built a house, and had a son.

I knew Jack was sick. I knew he was having a rough time with the chemo. I chatted with Sadie the other day to offer my help since they live nearby, and she sounded positive when she said she’d let me know.

And then…. this.

The details aren’t important. What’s important is that tonight, just down the road, someone I know – another mom who has been supportive to me, who is my age, who is raising a little boy – is now mourning the loss of her partner, her love, the father of her child. A little boy has lost his father. His father who is (was) the same age as my own partner, older by only a few days.

And now he’s gone.

My heart is aching for them. Though Sadie and I aren’t especially close, we’ve always had friends in common, and of course share the sisterhood of motherhood and the bond of a hometown. But having lost my own loved ones to cancer, to be a single mom of a little boy… I just can’t find words, can’t imagine such sorrow.

I don’t want to make this about me. The point I want to emphasize is this:

Sometimes, when you’re least expecting it, something happens to force you to reframe your perspective. That reminds us to be grateful. As I mentioned to my pilot the other day, “Sometimes we have to learn to find peace in the chaos.”

Gifts don’t always come to us in the way we expect. I would do anything to ease Sadie’s grief tonight, but – even though I in no way want to diminish the enormity of their loss – I am feeling humbled by the reminder to not get so bogged down in my own mess. That somewhere someone is hurting. That I should focus more on the blessings than my physical limitations. That maybe the best way to stop being wrapped up in self is to think first of others.

Tonight… be grateful. Reach out to someone in need of comfort. Hold your loved ones close.

And please… offer up a thought or prayer for Sadie and her son. Right now, and in the days to come, they are going to need “the village”.

Searching for a Silent Night…

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For several days, I’ve had a few bars of a song stuck in my head. Problem was, I couldn’t get quite enough of it to put a name to. But there it was… just a few bars of a chorus, drifting into my thoughts as I went about my days.

All through the errands.
Through the stressing over the Christmas gifts.
Through the worrying over finals and my sister and visitation schedules and HDMI cables and postal delivery times.
Through juggling phone calls with the Munchkin’s school and health insurance companies and pharmacies and doctor’s offices and banks and the mortgage company.
Through laundry and bill-paying and house-cleaning and therapy appointments.
Through the daily efforts poured into shoving aside the dark December memories that tried to push their way to the forefront.

All the while, I was tangled in an internal tug-of-war… an extension of my ongoing existential discord between allowing myself to rest when needed, and feeling guilty over all the things that went undone. Continue reading →

When a teacher passes on

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Sometimes you meet someone who leaves an indelible mark on your life. Who teaches you something you carry with you forever.

I’ve been blessed in my life to have met several such teachers. One of which was my childhood priest, Father Ron.

I’ll never forget the first time I laid eyes on him… this larger-than-life Italian who drove into our small town on a Harley, wearing a leather jacket and smoking a pipe, shaking up everyone’s notion of what an Episcopal priest was “supposed” to look like. I was 7 years old… and his Pittsburgh-Italian accent, salt-and-pepper hair, love of photography, and complexity fascinated me even then. I used to cherish afternoons spent playing with his boys (the eldest the same age as me, the youngest the same age as my little sister) at the rectory, Saturday afternoons working around the parish hall, and spaghetti pitch-in dinners, watching him standing guard over his own made-from-scratch sauce until it was ‘perfecto’.

As I got older, I began to learn that behind that tough exterior was a deep and intelligent mind, a soul who truly understood both the struggles of humanity and the quest to connect to something higher. He taught me to question everything, to never accept the teachings of man without weighing it against what you know, the wisdom of your teachers, and the stirrings of that inner voice. He was a man who had stared hell in the face and carried on anyway… he was tenacious and compassionate. I have carried his lessons with me since childhood. Even now that I’m grown, he never seemed to change. He always seemed invincible. During my last visit, though too long ago, left me smiling at how he never changes… relaxed, sharp-witted, opinionated as ever. I have been trying to find some time to go down and visit again, to introduce Munchkin to the giant who had such an impact on me.

Sadly, Ron passed away from this world this week. As much as I am saddened, I know that his family is heartbroken. He was a loving father, husband, and grandpa. He was a wonderful teacher, listener, and friend… and the world is a little bit darker without him. Those of us who were lucky enough to have crossed paths with him are forever changed.

When someone who has such an impact on our lives passes on… when someone we felt was impervious becomes mortal… it leaves a hole. It doesn’t matter that as my life became busier and I moved away from my hometown that I no longer had the time to sit talking with him for hours. I could walk in the door at any time and it would feel like no time had passed at all. He was just that kind of guy. 

Ironically, I just ran into his youngest son out of the blue the other day. We talked for quite a while, reminiscing about our childhood memories, shadows of a time that was much easier… before tragedy struck their family more than once, before my parents divorced, before any of us grew up and had our children and started our own lives. We smiled, laughing over how Ron (now long-retired from the priesthood) never changed. He was as loud and opinionated and funny and stubborn as ever. A giant. Invincible. I told him to tell his dad I said hi, and that Munchkin and I would be down to visit soon. 

But sometimes ‘soon’ isn’t soon enough. 

Ron wasn’t one to dwell on “woulda, coulda, shoulda”. He would tell me not to be sorry for one second that I didn’t get to see him one more time. The last time we talked he told me how proud he was of me… of my photography (which meant a lot coming from him, a professional photographer before he became a priest), and of the way I was building a life for myself and raising my son. I guess that’s all I need to know, to carry in my heart. 

Still… I know that any time I catch the scent of pipe tobacco and freshly-stewing spaghetti sauce… I will think of him.

Rest easy, rabbi. You are loved.
*Vita mutatur, non tollitur.*

Me & Father Ron, when I graduated from high school. May 1999

Me & Father Ron, when I graduated from high school. May 1999

Random Saturday morning musings…

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Well, technically, it is afternoon now. But I was up late, the Munchkin isn’t home, and I didn’t have any plans today. So I slept in, and I’ve been trying to get motivated to get some things done, but I’m distracted. Figured I’d jot down some quick thoughts to try to clear my head…

  • I know I said I was going to take a break from dating. I meant it. But just around the time I said it, I met someone online. A pilot. A cute one. (Who also speaks fluent French… Tais-toi, mon cœur!) But we were both in very transitional places in life back then, so we said we’d just chat and be friends. I didn’t give it much credence.But then we kept talking. And started to get to know each other. This has been going on for 3 months now. Last night, we spoke on the phone for the first time… and ended up talking for almost 3 hours.

    I’m not really sure what’s going on with that. He seems like a great guy, and we seem to have connected in a fairly uncommon way. But there are obstacles and some very large unknowns. And as of yesterday, his course seems to have changed and is now even more uncertain. So I don’t know what is going to happen or how to feel about it. On the one hand, I have always been one that is open to the possibility of the improbable. On the other, the cold of reality has thrown ice water on my rhapsodic imagination more times than I care to admit. Do I dare to hope that one innocent conversation be life-altering?

  • About a week ago, one of my very best friends did something that I never would have imagined possible: He chickened out.

    He took the coward’s way out of telling me something to my face. We were together, in person, for the entire afternoon on Sunday, and yet he chose to tell my by text message on Monday. And the thing is, it’s GOOD NEWS for him. A good thing. There wasn’t any reason for him to be afraid to tell me in person. I feel betrayed. Lied to. I feel like I’ve been shown – not just told, but SHOWN through actions – where I rank in his opinion. And Grandma always said, actions speak louder than words. And the thing is, he doesn’t even get it. He thinks that the fact that I was upset is about my feelings about something else entirely. And I haven’t tried to explain because I feel like he wouldn’t listen anyway, and I refuse to take his announcement and make it about me.
    But I feel so heartbroken. No one understands the time and the love I have invested in him. All the middle-of-the-night conversations spent convincing him that his life was worthwhile. All the long emails and IMs talking him through the dark moments when post-Afghanistan PTSD and depression threatened to overcome him. All the time spent worrying about him. All the groceries bought and meals cooked and miles on my car spent driving an hour to his place just to check on him, or spend the weekend, so he wouldn’t be alone while he struggled through a year of unemployment. And I’ve never gotten what I ever felt was a sincere thank you. I’ve heard “Well, you didn’t have to do that,” or an off-handed “I appreciate it,”… and I don’t want to seem ungrateful, but it feels like so very little comparatively. But maybe that’s on me. Maybe the fact that I feel things so deeply puts an expectation on others. Maybe he isn’t able to express his emotion in the way I need him to. I’m not sure. All I know is that right now, I still hurt, and I feel cast aside.

  • Yesterday was my last day of classes for this semester. I have to say, I’m so glad… but it feels sort of unresolved. I still have finals next week, but I don’t think that’s it. I think it has more to do with me feeling like I never hit my groove this semester, and so all the plans I had to get my grades up even more, to do all this work to catch up, my plans for studying, just didn’t play out the way I wanted. I will pass (without taking any Ws), but it is so hard for my perfectionist side to accept what I feel could have been better. But I also know there’s not much I could have done to change the outcome.
  • There’s this thing going on. It’s not good. And I can’t talk about it publicly, because it’s not my story to tell. But it is a family thing, and it’s affecting a lot of people around me. There is a lot of fear and sadness. Maybe still some hope, but the outcome and decisions aren’t up to any of us. It’s a big weight, and I’m worried.
  • This fibro and CFS is driving me nuts. Some days I feel good. I feel like I’ve reached a much better level physically – I’m always some level of stiff/sore, but with meds and new glasses, a lot of the bigger issues have been resolved. But this last week has been rough. I couldn’t sleep last Sunday night, and it threw my whole week off. And it’s frustrating. I feel like it has stolen some of my spontaneity from me. I feel like I’m torn between taking care of myself and coming across as an invalid. I’m not an invalid. I need to modify and adjust, and I’m working on trying to get back some of my upper body strength, but I’m still taking care of myself. But it’s hard, and I never really understood how people feel when they live with an invisible illness like this. I suddenly get the shame and embarrassment. I don’t know how to talk to anyone about it. What do you tell someone new? How does it color their perception of you? Besides my pilot, I made another new friend at school this week… a great gal from my French class who may just be my kindred spirit (despite being 14 years my younger)… but I fear telling her. I fear telling anyone. But then I feel like I’m lying, and I detest lying. I don’t know what to do.
  • Munchkin is gone this weekend. With SD. I wish he weren’t. Not that I don’t want him to have a dad; I do. But I want him to feel safe and happy, and my mother’s intuition is telling me something isn’t right. I’m trying to figure out a way to make this better, but courts and evidence and psychologists and emotions are all complicated, expensive, and time-consuming. Still, the crestfallen look on my child’s face when I have to tell him again that he has to go for the weekend despite his tears and pleading to stay home…. it breaks my heart.
  • I had a bit of a lull in the massive purge I started on the house. I think that the supercharged all-in-one-weekend bedroom makeover for the Munchkin’s birthday in March sort of wiped me out. Fortunately, my mom is a rockstar. She’s sort of kept the embers burning in the interim, and let me delegate several things to a “Mom List” this week. Today, even though I have a severe itch to go buy paint and start ridding the living room of the drab sage walls and finally start the transformation to my “vintage map/world exploration”-themed decor, I think I’m going to try to force myself to focus on the rest of the organization for the office and on getting the old broken wine rack out to the garage. If I can do that this weekend, then maybe I can reward myself with some fresh sunny yellow paint next weekend.

That said… I do feel better now. (Never doubt the power of therapeutic writing.) I’m going to crank up Pandora and go tackle the assembly of my new wine cabinet.

Parlez-vous plus tard, mes amis! Joyeux Samedi! 

I may have fibro, but fibro doesn’t have me

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It’s been a rough pain day.

Well, last couple of days, really. I generally live around a level of 3-4, but every once in a while something hurts that doesn’t normally bother me. For a couple weeks now, my lateral deltoid muscles (i.e. top middle small muscle of the outer shoulder/top of the arm… the green one in the pictures here), particularly the right side, have been giving me grief. But, it’s not intolerable, so, besides mentioning it to the chiropractor (who listed which of the exercises on the LOOOOONG list he gave me that *should* help), I haven’t worried about it.

But then I fell. Twice.

Friday night, I tripped over Miss Lily (our Valley Bulldog). If you’ve never met my furry children, let me just say that they think they are people. Lily was adopted as a puppy, and Max (the Pug) was a rescue from the Kentuckiana Pug Rescue (sort of… he was surrendered to a local foster home, which happens to be my sister, and he just never left). We believe Max had been abused; Lily was an only dog for 3 years. So they are both attention hounds (pun not intended, but amusingly apropos); Lily because she is jealous, and Max because even 3 years later, he still acts like he’s starved for affection. They are the sweetest, goofiest “therapy dogs” – they are an essential part of our little family, and I can’t imagine life without them.

Even still, sometimes they drive me nuts. Mostly when they get underfoot, which is of greater concern when the Munchkin isn’t home.

Back to Friday night… when I was reaching to turn off a floor lamp in the living room before bed, Lily got right behind me. Except I didn’t know that until I tried to step backward. Of course, I didn’t want to fall on her, so I kept contorting in a weird way both trying to catch myself and fall away from the dog. I landed in an ungraceful heap in the middle of the filing I currently have spread out in the living room to be sorted. Papers everywhere, dogs freaking out, and all my weight on my right shoulder and my right hip.

I’ve recently also been having trouble with piriformis pain. This is karmic retribution, I am absolutely certain, for all the times my sister and I teased our poor mother about her years-long struggle with piriformis syndrome (i.e. “Haha, so funny, Mom has a pain in the @rse!”…. suddenly so very UN-funny). Again, this is particularly right-sided.

Today, as we were taking the dogs to the dog park, I fell again. I’m not entirely sure what happened there… the bulldog was in front of me, there was another dog down the sidewalk, the pug went nuts (he’s  only aggressive when he’s on a leash… let him off, and he’s the biggest chicken in the park), there was a step… regardless, I went down again. On the right side, again. This time I did manage to cut up my palm, in addition to missing the dog and saving my glasses. Just a little scrape, but this time there were witnesses. Blegh.

I feel the need to state that I didn’t use to be this clumsy. I’ve never really been the one who ended up with the scraped knees. I danced for 12 years as a child, I did theater and musicals in junior high, high school, and community theater, I was in marching band in high school, I practice yoga and pilates on an intermittent basis, and (as a curvy girl) have always been pretty conscious of the way I carry myself. I am flexible, graceful, have an excellent sense of balance, and can turn cooking and cleaning into a sort-of dance. I do NOT fall.

So the fact that I’m suddenly FALLING [what feels like] all the time – which, in reality, is a handful of times over the last 4-6 months – is frankly pissing me off. And it scares me, because I don’t know if this is just something I have to live with, or if it will get better as I work to regain strength.

When we got home, I was feeling pretty bummed. The scale hadn’t been kind this morning, and now I’m becoming clumsy. I can see all my dreams for learning to ballroom dance and climbing Machu Picchu and seeing Angkor Wat and ice skating in Rockefeller Center and wandering around Mont St. Michel and Santorini and Giant’s Causeway and Cinque Terre and le Pont Neuf… well, you get the idea.

Anyway, my stream of consciousness went from falling to climbing to vacation, and I remembered I needed to look for hiking clothes online for our upcoming trip to Colorado, which brought out the tape measure, which reminded me I hadn’t recorded any measurements for a while. I started recording them a while ago, first because I was in a diet/exercise accountability group, and then because I started on a new supplement for inflammation/swelling, and I wanted to track if it was working.

Which leads me (finally, I know) to my pleasant discovery: since December of 2013, I have lost a total of 25 inches overall.

What the WHA…?!?

Shocked me. I recently gained back a few of the 40 lbs I’d lost, and when you’re hurting and sore, everything feels BIGGER. I have been having wardrobe frustration lately, and also somehow have started getting hungry around 11pm (after being completely NOT hungry most of the day), so I really had no idea that I had come so far.

That inspiration fueled me for the afternoon. I cleared out another bag full of clothes from the closet. I ordered a new pair of hiking pants (on sale… hooray!) for the San Luis Valley next month (this is a big deal for me… because I’ve always struggled with active wear as a plus-size bottom, so I usually just wear jeans for everything besides work, regardless of the season). And then… hold on to your seats, ladies and gents… I texted my sister and asked her to come over and spend some time in my closet helping me put together some outfits (also an enormously big deal… my sister and I have completely opposite tastes, but she is skilled at layering and accessorizing, whereas I’ve spent the last few years acquiring a wardrobe full of mix-and-match simple basics that are thoughtless to wear, simply because it was easier and faster). A conversation with one of my coworkers the other day (who is always impeccably dressed with all the adorable layers and accessories, looking bold, classy, AND trendy), combined with warmer weather, the revelation of my actual progress, and the journey I am on right now of rediscovering myself and creating a new normal… all of these things coalesced into a desire to start putting effort into looking “put together” more often. And I should care. I may be a big girl, but I still have a good figure, I’m a professional, and dang it, I just like being girly.

I say all of that to say this: I have been feeling, intermittently, like the fibromyalgia was winning. I’ve been exhausted, and hurting more than usual. I’ve got some projects in the pipeline that I need help with that I previously would have been perfectly capable of doing alone, and that frustrates me. I’ve developed a sudden and unbecoming sensitivity to gravity. And just to add insult to injury, I finally broke down and applied for services through Student Disability Services. As much as I tried to avoid it, to get by on my own, something had to give… it was either going to be my grades or my stubborn, prideful independence.

But today, I was reminded: 30 lbs and 25 inches is nothing to sneeze at. I’m still up and moving. Some days I get tired, yes. Some days I’m sore and stiff. Some days need more stretching and sitting on a tennis ball. Some days require intervention from a licensed professional (i.e. the chiropractor and/or a massage therapist). But I CAN do most of the things I want, with a little modification. Yeah, I have to climb on the counter to open the kitchen window now. Yes, I had to request help from Student Services to allow for additional absences and adjusted homework deadlines. But I need to bear in mind that those are just tools. I’m using the tools available to me to keep going. I haven’t given up. Lord knows it would have been easier to give in. It would be easier to quit school than keep chugging along at a snail’s pace while working full-time and trying to raise a spectrum kiddo. It would be easier to take a brainless job and not aim for more. It would be easier to put the Munchkin on stronger medications or to decide that intense therapeutic intervention was “too much of a hassle” or too expensive. It would be easier to stay in an apartment and not be responsible for maintenance and repairs on this big house. It would be easier to give in to the pain and let my muscles go to waste, using it as an excuse to let the pounds creep back on.

But I refuse. I am still going to live my life. I deserve to look nice and feel good about what I’m wearing, rather than trying to dress down to minimize my obvious curves. I deserve the right to fight for my education, and to use whatever tools are available to me to get there, no matter how long it takes me. My son deserves someone to fight for what’s best for him, and not just settle for the easy way out. It would be a lot more fun to take all the money I spend on medication and doctor visits and supplements and therapy, and put it toward a nice vacation. I worked hard for years to get out of debt and be able to provide a home for my son: a sanctuary with a backyard and his own room and a swingset and room to run, just like we had as kids… a tangible source of stability and love that I can give him unlike anyone else. He deserves to be given the tools and resources now so that he can be successful and independent later. And me? I am only 33 – I am just getting started. I will not give in to the pain on the bad days. I will stretch when it hurts. I’ll pick myself up when I fall (literally). I’ll fight through the short nights and the paperwork and the student loans to finish the education that I so desperately WANT. And I will still go and see and do the things I want to. I will not let FMS/CFS win.

So yes… maybe I’m a bit slower than I used to be. Maybe I will still give in time to time to easy, mindless comfort of my jeans/t-shirt/cardigan uniform. And maybe y’all will have to push me up Machu Picchu on an alpaca. But I will NOT give in. I have fibromyalgia, but fibromyalgia does not have me.

Celebrating Different… World Autism Awareness Day 2015

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I have a confession:

There was a time when I felt ashamed of the Munchkin’s ASD.

Now, before you call out the lynch mob, let me give you a little background…

The Munchkin wasn’t properly diagnosed until he was 7. Looking back, he had traits I should have recognized, but he didn’t have some of those more “classic” signs that might have set off a bell for me. He was social. He was cuddly. He didn’t have OCD tendencies like stacking things in patterns and lines. Even though I recognized the pigeon-toeing and the lack of eye contact and the verbal delay, it didn’t add up. His dad and I split up when he was 3, and then his dad was deployed to Iraq for a year. (If you know anything about military deployments, then you have some idea of how difficult a deployment is… not just the absence, but the reintegration upon return.) While we were still in the reintegration process, I survived a date rape and sexual assault; of course, I didn’t share this with my then-five-year-old… but I could sometimes swear that he’s empathic. I know he knew somehow that something was wrong. He may not be able to put a name to an emotion, but he certainly picks up on the subtle energies of the people around him.

So, how exactly does a 3- to 5-year-old child cope with stress? It was these very big things, coupled with Munchkin also having “hidden asthma” that took some creative investigative work to diagnose, that delayed us figuring out exactly what was going on in that little brain.

I remember the day Dr. K. told me for certain. It was surreal. I didn’t really absorb it right away. And even then I knew the Munchkin’s father wouldn’t accept it. How was I going to handle this? What would his peers think? Was he going to be labeled? *gasp!* Your child being “labeled” is supposed to be the worst thing that can ever happen, right?

So for the first couple years, I was discreet. I shared with his teachers, of course, and the principal. I’ve been lucky enough to be able to keep Munchkin at a small private school; this has allowed him much more personalized attention in these early years. It wasn’t until two years ago that I realized perhaps, in this case, discretion was NOT the better part of valor. Two things happened that began to change my mind.

The first was seeing a now-famous TED Talk by Dr. Temple Grandin. Though it was recorded in 2010, I was just getting into TED around a year after the Munchkin was diagnosed in 2012. I listened to this brilliant scientist say:

“We’ve got to think about all these different kinds of minds, and we’ve got to absolutely work with these kind of minds, because we absolutely are going to need these kind of people in the future.”

FUTURE.

This well-educated, well-spoken, highly regarded, brilliant, AUTISTIC scientist who had already left an indelible mark on the world was telling me my son had a future.

Of course, I knew that. But when we first heard “autism”, the future I had envisioned changed. I didn’t know what it would… COULD… look like. I was lost. But then, Temple Grandin reminded me that not only did my son have a future, but that his mind is NEEDED in this world.

That started turning the tide for me. I began to read, and research, and start re-framing the way I thought and spoke about our new narrative. But I was still being pretty discreet about it.

Until the day the Munchkin came home from school in tears.

Unlike a regular “rough day”, this time he said, “Mommy, [Little Girl in my Class] told me today that I wasn’t going to my school anymore.”

“Well, why did she say that?”

“Because her mommy told her that. Her mommy said that I get special treatment, and that nobody wants me there, and I don’t get to go back.”

…*cue awkward pause whilst I scooped my jaw off the floor*…

This is one of those moments that every parent dreads. You know, deep down inside, that one day you’re going to have to deal with one of those climactic “school situation” moments just like on tv, and you imagine yourself handling it like June Cleaver instead of Roseanne Barr, but something goes wrong and you all end up on Oprah.

Fortunately, I managed to be calm and non-confrontational. I spoke with the teacher (who was equally shocked). But it was then that I realized that, by not disclosing my son’s truth, by downplaying our situation, I had created another problem. And worse, I was sending the message that my child wasn’t good enough.

And there it was. The light-bulb.

Ever since the Munchkin was little, he’s been trying to please his daddy, and nothing is ever good enough. That’s a novella for another day… but suffice it to say, I suddenly realized I was failing at being his advocate. And it was time to step up.

My first step was a letter to all the other parents in our class. Then social media and my official “coming out” as a spectrum mom. And people were shocked.

What? How long? You can’t be serious…. But he talks. He goes to a “regular” school. Are you sure? Maybe you should get a second opinion…

Fast forward three years… and let me answer some questions from our journey thus far:

  • Yes, we’re sure. The Munchkin has high-functioning autism spectrum disorder (formerly known as PDD-NOS, or even mild Asperger’s). He’s not mean, aggressive, stupid, or being shown preferential treatment.
  • No, I’m not the one who diagnosed him, and No, I don’t need another opinion. I am very comfortable with the opinions of his team of 3 MDs, PsyD, 3 BCBAs, ST, OT, LCSW, and 6 (count ’em, SIX) ABA therapists who all have come to the same conclusion: Munchkin is on the spectrum. He also has asthma, ADHD, and generalized anxiety disorder.
  • NO, I do not for one fraction of a second believe that his autism was caused by vaccines. That theory has been debunked, and the quack who wrote it disbarred. Further, even if vaccines DID cause autism (which they DON’T), I would much rather my child be autistic and alive, than die from some common preventable disease. Autism is not a death sentence. Communicable diseases can be. (And don’t even get me stated on herd immunity.)
  • Yes, the Munchkin is on several medications. No, not a single one of them is “for” autism. He is treated for asthma, allergies, and ADHD, and we manage everything else with behavioral intervention (plus coffee, patience, and lots of trial-and-error).
  • No, I am not “loud and proud” about my son’s ASD because I’m showboating, fishing for sympathy, grasping for the spotlight, or suffering from Munchausen’s by-proxy (and yes, I have been accused of ALL of those things). I am outspoken because I am not ashamed of my child. He is beautiful, smart, funny, curious, and has a heart the size of the Yukon, and I love everything about him. I do not want him to ever – even for a moment – believe that I don’t love and accept him for who he is.
    Do we work on social skills and behaviors? 
    Yes.
    Do I encourage him to try new things, try to manage his sensory responses, and hold him accountable for his actions?
    Damn right, I do.
    But I also forgive. I listen. I try to put myself in his shoes. I learn. What works for other kids doesn’t work for THIS kid, because he is different. NOT LESS. Just different.

A funny thing happens when you start being vocal about something that is stigmatized. Eventually, someone is going to slowly, maybe even in a whisper, raise their hand and say, “Me too.” This is the kind of discourse that my rhetoric professor would tell you has the power to change the world, because lack of discourse is what creates that stigma in the first place. Two of the most humbling experiences of my parenting ‘career’ have been the moments when two other moms of small children told me that our story – that me speaking out and standing up for my child – helped THEIR children get properly evaluated and begin to seek early intervention.

Which brings us to World Autism Awareness Day. This year, for the first time, the Munchkin is at a place where he’s starting to grasp the concept of autism. To understand that his brain works a little differently than others. Unfortunately, he also gets a lot of mixed messages. I know that sometimes, he doesn’t feel safe to be himself.

So it was time. It was time for me, and our family, and our “village” to stand up and be proud. To show the Munchkin how much he is loved just as he is. That he makes people happy, that he IS enough. Over a couple of weeks, via blog and social media, I asked folks to Light It Up Blue with us on April 2nd, and to send us their photos so that I could show the Munchkin how many people believed in him.

And I was not disappointed:

Just a few of our wacky "tribe" who wore blue to support the Munchkin on World Autism Awareness Day 2015.

Just a few of our wacky “tribe” who wore blue to support the Munchkin on World Autism Awareness Day 2015.

 

The Munchkin loved every single picture. He kept coming back to the computer saying “Mom, show me that one again!” This community, our little “village”, didn’t just “light it up blue”… you lit up my kid. To say I’m grateful for the spark you gifted my child with that day would be akin to calling Mozart “just a songwriter”.

So it’s official. We’re going to do this every year. We are going to CELEBRATE different. World Autism Awareness Day, though an important and serious occasion, is also a cause to celebrate. Because even in cases of severe, life-altering ASD, we are celebrating that WE ARE. That ASD families share a bond of hope and joy and pain and struggle and different-ness. As Temple Grandin says, my son is “Different… not less.”

I am going to celebrate that difference. I’m going to keep speaking out. I will continue to advocate. I will continue to try to empower my child, to teach him to love himself, to teach him that he IS enough, even while I work to help him succeed, in whatever form success will look like for his life. I am proud of him, and it is my distinct honor to be his mother, and his advocate. As long as I draw breath, I will rave about this boy who has so changed not just my life, but now the lives of others, just by being his own, amazing, different, autistic, authentic self.

And THAT is something to celebrate.