Sunday, February 13, 2011

Autism and PTSD: Reflections on What May Be the Most Important Autism Parenting Post You Ever Read

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.


Niksmom said...

I cannot begin to adequately express how important this post was for me to read. I had no idea I was not nearly as alone as I thought. Wow. Grateful you are with us and sharing your stories.

MothersVox said...

Thanks so much, Niksmom. It was so important for me to write this, and I'm relieved to know that it has been helpful. I found it very easy to write but very hard to publish. Clicking the "publish post" buttom has never been so hard. Being angry, and raging against the circumstances, and then giving up, are all pretty unpleasant in oneself, but I was so moved by MOM-NOS's essay that I felt as though I should come out about all of this. Later I am going to write something about anger, that most fearsome of emotions.

Liz Ditz said...

Jennifer Myers wrote a similar post for The Thinking Person's Guide to Autism When medication is the right choice.

I put a link to this post inthe comments.

Like you, she struggled to publish the post.

MothersVox said...

Hi Liz, Great hearing from you . . . and thanks for the tip on that post. It was a great post to read and I like the Thinking Person's Guide! Great site! I think my hesitation about publishing this post was less about the medication than about the level of despair that I once felt when we had so many episodes. I am so glad that things are easier for our girl now, and therefore for us. We definitely feel the joy of our girl all the time. Onward to joy of autism!

Anonymous said...

thank you, thank you

Usethebrains Godgiveyou said...

As one who uses pharmacology, it has helped. Like Dr. Grandin, I use a tiny dose of anti-depressant for anxiety. I worry for Casdok. I think she's beating herself up over giving C medication. God love her,she is a great mother, and trying so hard.

The brain is an organ, no different from the skin, kidneys, the lungs...people use medication to help make their lives easier because of exema,diabetes, asthma. Psychology has given a negative connotation to brain problems and attached a tremendous burden of shame upon them, as if they could be overcome by pure will. Nothing could be further from the truth.

I'll have to go back and read the article. Thanks for bringing this to our attention.

MothersVox said...

Hello Vision of Autism and R.B. -- Thanks for stopping by and reading this. I'm so glad that this post is helpful to folks. It is not fun to write about the active desire to end one's life, but I also think that it helps us to protect each other by sharing these stories. I think knowing what it can be life for other can help to inoculate us from the despair that can sometimes overwhelm our better days and sunnier intentions.

Also, things were so very much harder when Sweet M was younger . . . now we have a much better medical support structure, and people who believe that her challenges are not just the result of bad parenting or too much TV! It's important for everyone out there who struggles to know that it does get better -- it really, really does.

Anonymous said...

It is helpful to hear things get better. I keep hearing PTSD used in connection with parenting ASD people, and that's incorrect. I know PTSD, which also gets better, btw. PTSD gives you flash-backs that are almot like instant re-winds to the situations attached to the PTSD - oni my case, a car accident: Walking down the street I would suddenly be trapped in the car, smell the oil, hear the sirens- freaky wierd. One other point: here are no guarantees in life: ASD does not always get better, at least not for everyone.

MothersVox said...

@anonymous I'm sorry that your comment has been in my email for a while. It has been a really busy time in our lives over here and I wanted to think about what you wrote. I agree that there are no guarantees in life -- absolutely. In my own experience, our lives have gotten better as we've gotten better medical and educational support for our girl. But not everyone's life will take the same trajectory. In the blogging circles where I know many autism families I think there is a feeling that things can get better with supports and understanding. Wishing that for you, always.