Susan's Blog

Sunday, May 19, 2013

Self-indulgent, self-hating, offensive blog post

I still think about It sometimes. My brain cells loop alot, rather than moving forward and outward. But I wonder if I get this out on “paper” if it will make the shitty thought go away.

The other day I was speeding down a hill on my bike — which is when I think of everything and nothing — and I realized that I’ve rarely written about a the question I first asked Dr. E, the developmental pediatrician who first evaluated Nat, 21 years ago. He delivered the diagnosis, “PDD, under the Autism Umbrella,” (almost charming, calling it the Autism Umbrella, as if it can shade you or keep you dry from unpleasant things). I was not stunned. I remember feeling as if I were in a movie or something — at a distance. I experienced the news in levels of my consciousness. The rational, intellectual part of me said, “Yes, yes, of course. That makes sense.” The fearful animal side of me thought, “What? What do I do? What should I do?” And the mother’s heart of me asked, “What did I do?”

I asked the doctor if I had caused Nat’s autism (I have written about this) because I literally did not know what caused autism. But he told me at least what did not cause autism: a cold mother.  He said it resided in Nat’s neurology. Later I learned that his brain cells — Pukinje cells? — were growing in clumps and not tributaries. Back then I thought, “Can I please just cut some of those cells out of my head– surely I don’t need to be this non-autistic, I could handle it — and graft them into Nat’s?

But deeper and more mired in shit was the thought: What caused this?

1) Was it because we chipped away at lead paint in our dining room while I was pregnant with him?

2) Was it because our car back then had a rotten egg smell of exhaust? Was there something toxic I was exposing Fetal Nat to?

3) It was a shitty labor and delivery, from the first. A ton of Pitocin. They go back and forth about that one. Or how about the fact that the epidural was too strong and I could not feel how hard to push?  I was pushing him out for three fucking hours? This is the one that reduces me to animal anger, because this one is not my fault. That fucking doctor knew the baby was in distress. He took blood out of the emerging Nat head and could not even wait for the elevator to run to have it looked at. And for what? What was he looking for? Low oxygen? Why even wait? Do a Goddam caesarean, Asshole!!!!

4) Was it because I was depressed in his earliest days? Did I withhold love because he seemed so fragile, I didn’t want to lose him? Every time I looked at him my heart twinged, pinched.  No, this one counts as Refrigerator Mother which we know is wrong.

5) Was it the shots? No, that has been disproven, but sometimes I fear it anyway. It makes a horrible kind of sense. But no, it has been disproven.

6) A top-rated Boston hospital specialist told me that Ned and I are genetic land mines for autism because on my side is all the depression, OCD, and anxiety. On Ned’s side are the geeks and nerds. So actually, I should not give Nat some of my brain cells, he’s probably happier with his own.

Ned says, “You will never know the answer. So you should not think about it.

But sometimes I do, because I want to know who to be angry at.


As a Dad, We did not physically live it like our spouse but we have the added guilt of thinking maybe she did do something. I banished that thought years ago but I hear it from new to Diagnosis Fathers. I believe at some point we will have some answers. I know that at this point no parents are too blame. I prefer to turn my Anger into action no matter how crazy and futile that action may be. I just keep fighting those shadows. Saying Prayers for all. – TannersDad Tim

— added by TannersDad Tim Welsh on Sunday, May 19, 2013 at 12:50 pm

This post makes me sad and it is sharp like a knife. I feel your pain as I also go through the exact same thoughts on so many days. Your story is so similar to mine, PDD-NOS. My boy is only six though but I study you and your beautiful son looking for cues to my future. Most days I am tough as hell but today after reading this, not so much. I also pushed for three hours. I did get a Caesarian but that took another two hours as my baby was jammed in a too small place for hours on end. They ripped me apart trying yank him out. How can I not think it is that, much like yourself. Maybe it was the antibiotics I was on, maybe I did this or that wrong. A useless loop. I am feeling your pain today. I am here with you. Thank you for the help you have given to many.

— added by Susan on Sunday, May 19, 2013 at 1:28 pm

I feel for you, I really do. My son who is 6 has PDD as well. I don’t know what it’s like to have an adult child with autism, but I can tell you this much, try not to be angry about it. I like to think that God personally chose me for this big job because he knew I could handle it, and I believe he chose you too! I know that I have days where I long to feel “normal”, to not have to be afraid of things that trigger my sons tantrums. The way I see it is kids with Autism make this world what it is. Look at Einstein they believed he was Autistic, without him where would we be? There is a point and a purpose to everything, we may not understand it, but there is. Finding someone to blame will not change who your son is. Just remind yourself that you were chosen for this, because you are strong enough to handle it. Hang in there.

— added by Christie Benton on Sunday, May 19, 2013 at 2:16 pm

This kind of question is always in the back of my mind. My husband and I are also “genetic land mines”, so that’s probably it, but I always wonder if I held them enough, and things like that.

— added by Alice on Sunday, May 19, 2013 at 2:44 pm

Whoa, you described exactly the looping script that frequently runs in my head, too, and most of your topics are the same ones that haunt me. I also have that glass of champagne I had at cousin’s wedding before I knew I was pregnant…did that cause this? I think I have internally examined every possible “bad” or inadvertent thing I “might” have done during my pregnancy to cause son’s autism. It is, at least in this point in modern medicine, impossible to know. For pete’s sake, now they point fingers at the age of the grandparents! We should no more blame ourselves than the parents that smugly pat themselves on the back for their honor students should take credit. They didn’t do that. As a stepmother of four children, born five years apart, with varying degrees of mental problems and life successes among them, I am more and more in the nature camp than the nurture one…thanks for a great post!

— added by Sue on Sunday, May 19, 2013 at 3:38 pm

D was an emergency c section. Scary experience, poor apgars at first. Of course you wonder. I say no to the vax theory, cause he hasnt had any ( and look at the similarities between D and Nat when they were babies, the exaggerated startle reflex, the huge wide eyes, it was all there from the start) BUT…here is something else I think about. What about if it is the fact that all us moms were vaccinated for rubella, just a thought. Like part of a congenital rubella syndrome so to speak. Here is why I have wondered about this. When I was pregnant with my daughter 20 years ago, and they screened my blood, they told me my rubella titers were thru the roof. Turns out in the 60’s or maybe 70’s I got the vaccine when they were still testing.(and my titers were still thru the roof in 93, go figure)My sister got the vaccine then too, and she has a severely developmentally delayed child who presents autistically and another with a structural brain abnormality. I guess I’m just saying who the hell knows. I drive myself nuts thinking about it then I have to quit. But still I always wished there was more research on the vaccines the moms may have gotten. Nothing out there.

— added by eileen on Sunday, May 19, 2013 at 3:57 pm

Yeah, add me in there too. We had a house fire and due to rotten insurance had to do all the demolition ourselves. Who knew we would get lead poisoning from creosote? Who knew I was three months pregnant?

I also had a doctor who induced labor while knowing that Charlie had the cord around his neck. He actually said afterward, “babies don’t breathe until after they’re born.” No, but their carotid still delivers blood to the brain, asshole!

Seven hours of labor with late decelerations and a crapload of pitocin, resulted in a limp,baby with a white body and a blue head. They had turned the monitors away from me, so that I would not be alarmed.

And the shots. And who disproved that? Was it the people that we would sue in unison if it was proven? Yes, it was.

— added by Janet bowser on Sunday, May 19, 2013 at 7:35 pm

And for me: Was it the really hot hot tub when I was 3 months pregnant? Was it the raw cheese? Was it the wine? Was it the shellfish? Was it my old house? Was it…? I don’t even know what else.

— added by Babette on Sunday, May 19, 2013 at 9:25 pm

Susan, this is exactly the place I go whenever things get difficult, particularly when Justin’s aggression ramps up. Was it the extra time it took to get him out during my C-section? Was it the IVF drugs? Was it the advanced organizational skills championed on both sides of his family? I’ve tried to banish the “loop” as much as possible, but it’s still there to haunt me sometimes. It helps to know someone else goes through it too. Thanks for sharing this.

— added by kim mccafferty on Monday, May 20, 2013 at 10:48 am

I have just recently found your blog. Yours is the first blog I have found that closest resembles my own feelings and experiences. When I read this entry with the reference to the movie, my heart skipped. I have described our “moment” similarly for years.
Thank you for all the information you have put out there. Parents need more and more of this.

— added by Kathleen Williams on Thursday, May 23, 2013 at 7:05 am

Susan, I don’t know the parent that doesn’t loop this subject. An 18 year vetran here…thanks for putting it in words. So many similarities and so much regret. The worst is when I look at my son and see, just for a moment, the kid he would have been without the autism. Hang in there.

— added by Ursula on Saturday, May 25, 2013 at 12:24 am