Susan's Blog

Tuesday, May 3, 2016

Questions Without Answers

How can I stop being sad/worried about Nat? I feel like I’m not supposed to be. I’m so well-versed in autism acceptance that I know I should not assume I understand what he is going through. I do not know what he is feeling if he does not express himself in a neurotypical way. Yet, I need to be vigilant in terms of his health, safety, and happiness. He is a dependent person. He is disabled.

So how do I make sure all is well in his life? What are the markers I’m to look for?

I have several tools at my disposal. I have my own education in social signs, which I use when evaluating what I’m feeling and what I think others are feeling. I’ve learned to read faces reasonably well, to interpret shifting, blinky eyes, to sense sadness in another person, and anger. But I’ve lived enough years as me to know that I’m sometimes wrong about others. My filter goes deep into my skin like catcher’s mask that is too tight, and may distort things I observe.

So when I see Nat furiously flapping and self-talking a blue streak, I have to wonder if something difficult is going on for him. Or when I see him under his covers during the day I wonder if he is depressed, because that is what I do when I’m depressed. How do I read the signs when I don’t speak the language?

I’ve been developing my own list of things I know, in a way of helping myself interpret and giving Nat what he might need.

1) Flapping and laughing: Feeling good. This is when I try to connect with him, when he seems open to sharing happiness.

2) Flapping and talking loudly: His normal state. I actually have to call his name, and stop him for a moment if I want to interact with him. So I don’t think he wants me to interact with him during these times. It’s like, why step into the ocean when the tide is churning?

3) Laughing and spitting: Happy but aware he may need to pull himself together. Laughing and spitting comes with sideways glances at whomever is in the room with him. But he also laughs and spits in his room. It’s not a dedicated spitting; it’s more like a side effect to the laughing. Sometimes I laugh with him and that is when he looks me in the eye, willingly. So I think it is a positive connection. I’ll take what I can get.

4) Flapping and then stopping and sucking his thumb: Something’s bothering him and he’s trying to calm himself. During these moments I try to gently ask if he is happy. This is utterly useless. Language is so hard for him during these times and my questions just make him stumble. I’m doing it selfishly, hoping he will suddenly respond the way I want him to. This state makes me the most unhappy because I become so painfully aware of our disconnect.

Am I saying that during these moments I want him to change? No. I just feel my heart clench, a common Mother pain we feel when we think our children are unhappy and we can’t help them. We just can’t, no matter what we want.

5) Smiling and pacing: Feeling really good (this happens most often when he’s just joined social group, and when he’s at Special Olympics, especially big competitions.

6) Being quiet in his room on his bed: ??? Tired? But is it okay for him to be up there for HOURS? Ben does it. I worry about that, too, but he tells me he is just tired. Max used to lie on his bed for hours, too. So does that make it okay, that Nat is doing it? They’re all different, dammit!

My unsatisfactory solutions: More lists. Because I don’t know for sure, I then tick off all the activities he has done over the weekend or during the week: Work, going to the gym. Cooking class, band practice. Special Olympics. Bike ride with me. Long walk downtown.

I am forever keeping the lists in my head, the “Is this enough?” list and the “Is he okay?” list. But nothing quite works to reassure myself that his mental state is fine. Last weekend when I saw him so busily vibrating hands, head, eyes, without any apparent recognition that others were around. This distressed me.

So I went back to my oldest mantra, my own version of self-soothing when my Nat obsessions kick in: It’s the disability. This is how it manifests itself.

The hardest thing about this disability (for me and perhaps for him) is that I don’t feel like I definitively know his emotional state. The behavior looks like anxiety. So should I be trying to intervene somehow so that he is less anxious? What would that look like, though? Anti-anxiety meds? Therapy? Where do I find a therapist for his discomfiture? And is that called for, if this is his natural state?

And if this his natural state, is he actually helping himself? And it just looks different from how I help myself?

At times like this I kind of wish I was like others who decide something is true and then stick with it. They have the ground of their own certainty holding them up.

But I can’t seem to do that with Nat. I need more evidence, because I fear that I will miss something important.


Monday, May 2, 2016

How I Got Here

It’s been a really long time since I wrote just to write. For me, not with an eye towards publication somewhere other than here. I’ve been doing so much promotional work and now presentations for the Autism Adulthood book that I am feeling the need for a different thing to focus on. The thing I do when I want to get away from writing is to write.  The thing I want to write about when I’m not writing about autism and my family is autism and my family.

Yeah, I’m not that original. For the last 26 years my whole life’s purpose has been to be a mother. This was not what I was raised to be. I was raised by a Career Woman, a focused, driven mother who went for her MLS degree when I was little and became part of the workforce before it was a thing. Mom was a feminist, and so that term has never been negative to me. I went to college thinking about what I was going to “be.” I studied humanities, world languages, history, literature, philosophy, to prepare my mind and soul for adult life. Mom and Dad taught me to value a life of the mind and then to get a purposeful job and make the world a better place. These values of theirs permeated everything in my childhood. From lists of books that I needed to know, to trips to the National Parks rather than Amusement Parks, to discussions about foreign policy and war, the rebellions of the ’60’s, to what it means to be a friend, a daughter, a sister.

My mother was a good, loving mother, and yet I never imagined myself as a mother. I rarely played with baby dolls. I played with Barbies. I pretended I was older, I lived to be sixteen.  I worked as soon as I could, as a babysitter, then a waitress, then an advertising assistant in a work/study program.

But when I met Ned, everything stopped. And then picked up a forceful speed, hurtling me towards him, with a certainty that I’d never felt about anyone else before. There was a rightness, a safety with Ned that was as exhilarating as it was comfortable. He was everything to me: handsome, mysterious, funny, brilliant, kind, and my best friend. My first love, my first lover. And I was his. I thought only that I needed to make sure we would be together the rest of my life, and second to that, I thought I would be a professor of history.

We got married, and I immediately became lost. The career did not come together, but even worse was my crisis in purpose. I did not understand what it meant that we were now married, different somehow than what we’d been. I still loved him, so much, but I no longer loved me. A whole decade of uncertainty and OCD and hypochondria began for me then, and a twitchy sadness and anxiety that made me want to run away, I could not stand the feel of my own skin.

So I did what you are not supposed to do when you feel this way about yourself — or so they say. Five years into feeling like that I decided to have a baby. I thought this would anchor me, keep me from floating around afraid of my own body. I was 27, so it was easy getting pregnant.  I knew exactly the moment Nat was conceived, because after a particularly festive and loving Valentine’s Day, late into the night, an image of an explosion came into my head.

And just like that, my life as I had known it, ended, and a new one began.  It became the age of Everything You Know is Wrong. Nat turned my life inside out, that’s no secret. But it’s interesting to me to see it in the long view, that in so many ways he came along right when I needed him to. And no, this is not Inspiration Porn for y’all, I’m not saying he was put on this earth for me — I’m not that egotistical. But then again, what’s wrong with believing that your baby is so special that he has a special purpose for you, for him? Who the hell gets to say that this is not true, even though so many other things are true as well? Of course babies happen randomly, autism is genetic roulette — or let’s say, genetic blackjack — and all children have a unique path and affect their parents in mind-blowing ways.

So, yeah, Nat. And then Max, and then Ben. I had them all pretty young, and all thought of doing something “else” with my life just got vacuumed right out of my universe, like a black hole. And yet, what was left was everything rather than nothingness. Now I had a purpose, even if I didn’t always enjoy it or understand it. There were so many times when suddenly things would all come together and my little sons would indeed explode me into perfect pieces of happiness. Max’s easy smile. His utter sweetness, like cake batter — a flavor I never get tired of. He showed me how much fun a mind could be. And Ben’s breathtaking clarity, his black jellybean eyes, seeing everything. The joy that day when he started drawing — pirate ship after pirate ship after pirate ship.

My whole purpose was to take care of those babies. But not alone. I had Ned with me, who split himself — lucky he is a Gemini — and became a father and remained king of my heart — along with my three princes.

And although I can’t say that I never looked back, I can say that I became me again as soon as Nat burst into my mind/life. Max came along so quickly, like Nat’s twin, utterly and magnificently different, beautiful and free. Six years later, my Ben arrived, the rushing back of a long-delayed high tide, sweeping me up in his energy.

Carrying me right back into Ned’s arms.

And there I have stayed, anchored and held by the four of them.