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I cried twice today in public.

Once for me and once for him.

I cried within 3 minutes of arrival, but with dry eyes and a smile on my matte face. My diaper bag disguised as a monogrammed symbol of excess rather than a symbol of unanswered questions about wipes and formula and a change of clothes for my adolescent. No one can see what is happening behind my eyes, especially if I cannot see the pity behind theirs.

I cried twice today because sometimes the race to suppress overactive tear ducts in a maelstrom of circumstance and emotion is an unfair competition of tortoise and hare. Sometimes I try too hard and one too many drops pools before one accidentally pushes its way past the checkpoint and spills down a cheek. It is quickly wiped away.

I cried twice today as I held up a wall, socially grinning and making silent deals with God to make no one talk to me. Us moms, we were all in the same place to help, but I was not on the list of volunteers, I figured it out and showed up anyway. Even the words I needed to hear would be a sucker punch to the throat and I would then choke on false pretense that transcends somewhere poetic. I don’t know where transcendence lies exactly–there are so many reasons those tears might seem to be faulty to everyone else. So I hold them in as long as I can and my tongue is held hostage, leaving me still alone.

I cry and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening emotion and I am no less embarrassed, no less ashamed, no less human for it either. And neither is he.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. I am tasked to teach my child how to move through this world happily, safely. Though we live in similar space as everyone else, he traverses along some alternate dimension often invisible to all the other children so I don’t really know how to do that. And because of that, sometimes, I cry.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I cry.

My boy wants to be part of the world but sometimes stands motionless with shifty eyes because he knows exactly the problem, which he perceives is him. While I perceive a world that does not know what to do with him. I am certain I am the only one who reinforces that. He worries. He should be worried, because I don’t always know what to do with him either. And sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. And because of that, sometimes I cry.

My boy buoyantly hoots and flaps and has a cognitive itch that somehow seems to be reached by repeating my name over and over and over in the space that should be the calm of our home. Diligent years he sacrificed to learn that what few words he might have are meaningful and understood because we have a limited time to teach the world otherwise. I taught him those things by making sure he always had a response. And in those times caught in an endless loop, he gets one from me, but it might be birthed breech–cord wrapped around its neck-choking and feral and blue in my fallibility. And because of that, sometimes I cry.

I worry one day my boy will read my words and will be hurt or angry or curious or furious and he will demand an explanation and he will walk out of my life because to him these were not words of awareness or advocacy or change. They were the words of HIS life. But that bittersweet day will be the day I will breathe easy with a newly missing piece who can navigate this world alone if he has to. I worry too my boy will be a man…still without the ability for any of that. And in my end, all the sacrificial words spoken on his behalf and judged were not enough to change the world around him leaving him alone. And because of that, sometimes I cry.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes We cry.

Sometimes We Smile (or Sometimes We Cry:Part 2)

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About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other “non-verbal” children. A2 was by far and away the most interested in communication and social interaction of the 4 kids in the group. At that point did not have an Autism diagnosis, nor despite my education or background did I even suspect this as the primary issue.

I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the therapists were wrangling to keep the kids all in one spot. After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy.

She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel-Hudson. A father’s memoir about his wordless child.

I had not.

A2 and I left the speech session and immediately went to the library to find it. I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability. But he was 3. He had delays. A gross motor delay, a fine motor delay, a speech delay. He had weird medical issues. He stopped growing. He flapped. But he also looked at me and smiled, knew his name and cuddled. Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.

That is until I read Schuyler’s Monster.

In some ways, I feel like that is where my story begins. It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain. And then….. To put it simply, I was knocked on my ass.

He was telling my story. He was me.

Schulyer was almost exactly A2 right down to the personality. I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day.

Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria. I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common. I finished the book and felt like I was underwater.

What was I going to do without Rob, Julie and Schuyler?

I felt connected to something and yet I never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is. I was not an avid reader of blogs and at that point was not on social media. I found their blog Fighting Monsters with Rubber Swords and reconnected with his words. Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is.

By this point, four years in, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Flappiness (Leigh) was there to say the things I couldn’t say. I then there was another (which is no longer around *2019 update…I have now seen her around..*) that made me laugh about our situation when I needed to laugh about it.

I now had a community and resources I could access whenever I needed it.

I am an accidental blogger. I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done. It wasn’t my time to talk. I don’t know if it is really my time to talk now, yet here I am. Instead of following 3 blogs, I follow dozens and all for different reasons. I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler. And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.

There is no need to be alone if you cannot find “your people” in your community. I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):

Day 2 2015. B is for Boredom

Day 2 2016: B is for Behavior