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.



Have you ever looked into RPM? Emma from Emma’s Hope Book blog and so many others have had such good success in finally finding a way to communicate in detail and express what they are feeling. It’s a great way for an individual on the spectrum to finally have an advanced education as well.

— added by a mom on Thursday, May 5, 2016 at 2:39 pm

I feel like you’re in my head with this one! I am always worried about missing something important, hoping that what I interpret as happiness or peace with his existence is actually true. Like you, I’m never certain about the “true.” I think I will always wish for that certainty. Loved this!

— added by kim mccafferty on Thursday, May 19, 2016 at 10:43 am

“Doing nothing”, at least for me, is a way to reset my brain after a stressful period of time. For me, it’s 1000-piece puzzles over the course of 8 consecutive hours, for your son it’s just laying on his bed. While I don’t have the full diagnosis of Autism, I’m Aspie enough to have experienced that feeling.

During that time, it’s like a physical need to shut everything down. I can plan ahead for it, I can choose a time that doesn’t interfere with the rest of my life, but it’s still a need that crops up every now and again. An overall feeling of being overwhelmed prompts this.

I would say – help him schedule his “do nothing” time, but if he initiates it, don’t interrupt it just because you feel he needs to come back to reality. Only if it’s something time sensitive or important.

— added by S on Monday, May 23, 2016 at 10:55 pm

Thank you, this helps.

— added by Susan Senator on Tuesday, May 24, 2016 at 5:43 am

Thank you, Kim. We are so alike!:-)

— added by Susan Senator on Tuesday, May 24, 2016 at 5:44 am

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