Recently I came across a piece of writing I’d done in 2008, which I’d entitled A Dark Time. From this vantage point, I can see that I was severely depressed when I wrote it, and I warn you: it’s not pretty. It’s my Secret Demon Thoughts and I never thought I’d share them, but something compels me to do so. Perhaps it’s for those who are newly on this autism road, those who need to know they aren’t the first to be in despair.


Something’s not right with Joseph, and it’s definitely not right with me. I am pretty well as low as I get. I am crying constantly. I have bags under my eyes. I can’t bring myself to exercise. Nights are an occasion for dread, and the only way I can deal with them is by drugging myself. This brings on a sleep that isn’t really a sleep, so I wake up already tired and unbearably sad.

That’s how I feel, really: unbearably sad. I am so tired of Joseph and of being his mommy. I am also tired of Blue Eyes and being his wife.  I hate the financial pressures we’re under. I am sick of the financial demands of the biomedical autism industry. I feel claustrophobic in our house,and Joseph is such a pill that leaving the house is almost not worth the trouble. I’m tired of trying – of being the “up” RDI mom, of being so committed to the cause of curing my kid of autism. I want my life back. I don’t want the life I have.

I don’t want to see Joseph for another moment. I can’t stand him. I hate him. I hate being his mom.

The feeling I have about Joseph right now is like something creepy on your skin – I want it OFF. And I hate feeling that way about him. I beat up on myself that I feel that way. But in a very real way, he is the cause of all this pain and discomfort, so it’s easy to blame him.

I’m tired of trying to stay so damn conscious during all of this. I don’t want to use it anymore for my spiritual growth. I want it taken away. I want Joseph to get hit by a car so that he’s just gone, it’s over, no more. Give away the toys, the  books, the clothes to some other children and get our lives back. Sleep. Go on vacation. Enjoy ourselves. Read books. Meditate. Find ourselves again. Go into silence and seclusion for a month. Go on a huge backpacking trip, Blue Eyes and me, in some indescribably beautiful place for a long time.

Why do I have to go to an RDI Conference for my vacation? Why do I have to go fight for my son’s life, keep pulling him out by the fingernails, when I’d rather drop him in and let him go? Is it just that I’m so tired? Where did my motivation go?

What a black, black space. I want to fight it and yet it holds me here,  not loosening its grip. You’re not done here, it tells me. There’s more to see. Hang on a little longer. I think longingly of friends I could call, people who could listen and talk back and help me out of this. But then I talk to them and it doesn’t help. I think this is between me and the Darkness.

I feel like I’m falling to pieces. I don’t see any way out.


I remember those days — although, thankfully, they are fading into that lovely faraway place where the sound is dulled and the edges aren’t so sharp. But parents all over the world are going through what Blue Eyes and I went through. I don’t think us ASD parents talk enough about the bad stuff, like wishing our child would get hit by a car so it could be over. One of my intentions, when I started this blog, was to be completely authentic. Saying the bad stuff is part of that — so, yes, when it was really bad I got so low that I wished my kid was dead.

Things are so much better now. I was in the kitchen this evening and Joseph was pestering me: poking me and teasing me and just plain bugging me. I realized he wanted my attention, so I sat down and started teasing him back. We had a great, goofy time together and I took it for granted. Until I sat down and re-read those words I’d written in 2008.

What I didn’t know in 2008 was that it gets easier. Even if Joseph had never improved, I have changed. I have gotten stronger. I’ve discovered resources to help me through. I’ve found people and programs to help shoulder the burden so that we’re not alone.

And then there’s that lovely concept: acceptance. One of the great gifts Joseph has brought me is a deeper acceptance of things simply being the way they are. Resisting brings misery. Acceptance brings freedom.

I still work on acceptance. Just yesterday I ran into an old friend and, while we caught up, Joseph flapped and hummed. My friend didn’t know about the autism, but there it was, in plain sight. I didn’t like it, not one bit. But after a while I remembered that, if you fight with reality, you always lose. So I stopped fighting.

What a long, strange trip life is. Our limited perspectives only see so much, but I believe that, when this lifetime’s over, I’m going to sit down with God and say, “Ohhhh, that’s why I needed a child with autism. Look at how much I grew, how much I let go of, how much compassion I gained. Thank you ever so much for that opportunity.”

Yes, I can finally say thank you. For the trials and the terrors, for the learning and the letting go, I truly am grateful. Thanks, God, for the whole long, strange trip.