MOM-NOS has written a must-read post about Post-Traumatic Stress Disorder and Autism Spectrum Disorders at Hopeful Parents. The takeaway from MOM-NOS's post -- one that is indescribably important -- is that it does get better.
I know that might be hard to believe. I know that for families in the first months following a diagnosis, or in the throws of battles with the schools and school boards, or with family members who think it's just a case of poor parenting, that it will be hard to believe that it gets better. But it does. I am living proof of that . . . the low volume of posts here at Autism's Edges in recent years is silent testimony not only to how much easier our lives are these days, but also to how much easier I am with our girl's challenges.
Back in the days when I before I started this blog we were living a life of constant hysteria -- we did not know when the next explosive moment would be. We did not know when the phone rang if the sound in the background would be our girl screaming as though she was being tormented by demons because there had been some minor (minor for typically developing folks) disruption in her routine. We did not know if we'd be able to make it through a grocery store visit, or a walk to the corner, or a trip to the swings at the playground without an episode. We did not know if our girl would ever learn to talk or to read. We did not know how we would pay for therapies and interventions and lawyers. We did not know how we would crawl out of the years of sleep deprivation. We did not know how we would get from point A to point B without a crisis. If you've read this far, you probably know what I'm talking about.
Every single day was like a personal battlefield with obsessiveness, explosiveness, and rigidity -- not just that born of our daughter's neurological difference, but that of educators, doctors, therapists, and family members. We were embattled and angry and weary.
At one point, I gave up. It was October 2002.
We were still reeling from the impact of the 9/11 attacks on our lives and livelihoods. We live not far from the site of the former World Trade Center and all of us, including our then three-year-old girl, had seen things that no one should ever see.
But on the other hand, it was more than a year after 9/11 and nearly two years after our girl's first of many diagnoses. And things were not getting better. Not even a little better. There were therapies (OT and speech and a para) and there were constant trips to specialists, and things were not getting better.
I was sinking. Not fast, but steadily. Sinking, sinking, sinking.
Most people think of me as pretty sturdy. I look sturdy. I act sturdy. Resilient is a word people use to describe me. So no one really knew that I was sinking. Even the people I told that I was sinking didn't think that I could sink as low as I was going.
To say that I wished to end my life would be to understate what was feeling. I wanted to end my life and end the world. In those days, when I watched apocalyptic films like Armageddon or Independence Day or War of the Worlds, I was rooting for the other side. The space aliens and the errant asteroid were just getting the job done. Three cheers for the space invaders. Bring on the asteroids. I understood, in a visceral way, why the fantasy of global annihilation has such popular appeal.
One Saturday afternoon I just gave up.
I am not particularly proud of this moment -- who would be? But it did happen. And for reasons that remain mysterious to me, the enemy did not accept my white flag. I went on. The world went on. I crawled off the floor of my bedroom and vomited and went on.
And we got help. Real help. Helpful help. A pediatric psychiatrist that we adore. One of those doctors you would go to the end of the earth for, as Jess of Diary of a Mom aptly puts it.
Slowly, and sometimes quickly, things changed. Our girl's anxiety was finally treated. Within days we were able to stop walking around our apartment as though there were land mines under the rug or the sink or the stack of books about autism at the bedside. She smiled and laughed again. My depression was treated and I started to see some light coming in through the cracks in our craggy lives.
Psycho-pharmacology saved our lives. Speech therapy, and talk therapy, and EMDR, and all the other therapies helped, but without the medication, we would have died. This is not an exaggeration, it is just a fact.
The medications were not perfect -- we had problems with dosing, and problems with the Paxil suspension, and ultimately the anxiety came back and we had problems until we got her on another medication. And the medications didn't and don't solve everything. Her speech and language improved exponentially, but she still needed speech therapy. She still needed OT. And she still needed a para-professional in the classroom. But they gave us the space to help her, and to dig our way out of the depths of despair that had become everyday life for us.
In the process of getting the help we needed, we lost some people in our lives. In a particularly painful moment, one close friend suggested that we had failed as parents and were drugging our girl into compliance. We love this person, but we couldn't listen to this. We could see with our own eyes that our girl was feeling better, learning, growing, and developing in ways that would have been impossible when she was in the thrall of obsessions.
You may lose some people along the way, no matter what you do. Please don't make the mistake I made and risk losing it all. There are lots of people out here and there is help out here. Lots and lots of help. If you are feeling anywhere nearly as badly as I was feeling in 2002, get help.
You'll be glad you did. Let the space aliens lose this round.
Illustration: from the National Institute of Mental Health web page on PTSD.