Wednesday, April 22, 2015

There is no one to blame, myself included.

In my blog post “15 Truths of Parenting a Special Needs Child” I touched on a topic I have been meaning to expand on for a while. It was Truth number twelve: “Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.” Mostly we don’t because we are too busy!

Tate and Sydney, Dec. 2014
My daughter’s disability was a direct result of her birth mother’s poor choices. Fetal Alcohol Syndrome is a disability a child is born with that is completely avoidable and caused by a pregnant mother’s alcohol consumption. There is a direct cause and we know what it is! Parents of children with autism do not have that. We do not KNOW and it is maddening sometimes. We have these little nagging doubts once in a while. Like: What if, someday it is discovered, taking ibuprofen while you are pregnant causes autism? I did that. I took ibuprofen sometimes. What if, research in the future tells us living near high voltage lines is the cause of autism? We built our home very near power lines. What if eating fish while you are pregnant is what causes babies to be born with autism? I ate an occasional tuna sandwich during those nine months. What if I did this to him? Most of the time those little nagging doubts are silent but once in a while they whisper to me.

I have read the newer research suggesting autism is genetic and begins in the womb and I believe it is an accurate premise. However, I live with one foot in the autism community where somewhere between 25% and 50% of parents believe immunizations are to blame. So, I hear it. A lot. And, although I know there is really no research to back it up and I do not believe immunizations are to blame…. What if? I know Tate was “quirky” from infancy, but he did regress at age two and sometimes, once in a while, this little tiny droplet of dissonance creeps in and whispers to me, “Maybe they are right. Maybe YOU did this terrible thing to your child. You may have saved him from polio, measles, mumps, rubella, and many other diseases but you caused him brain damage.” And then, the voice of reason drowns out the whisper and I know that there is no one to blame, myself included. 

We’ve come a long way since “the refrigerator mom” theory. Some of you might be young enough that you have never heard of this theory. A man named Leo Kanner wrote a paper in 1943 that blamed a child’s autism on their parents. He believed that a parent’s lack of love and attention (warmth) for their children caused autism in their children. Bruno Bettleheim jumped on board with Kanner and wrote articles in the fifties and sixties echoing the same theory. Bettleheim compared the parents of children with autism to guards in a prison camp and their homes to concentration camps. I have never for a minute believed poor parenting caused my child to have autism. Never for a minute. But, I am just the tiniest bit defensive about this because I am not sure everyone else in society understands that. You cannot love the autism out of someone! And by the way, you cannot spank it out of someone either.

Back when I first learned what autism is and before I had done much reading or research, I did worry and wonder a lot more often if I had contributed to Tate’s developmental delays. Had I given him enough attention? Maybe if I’d read to him a little more or taken his bottle away a little earlier. Maybe if we’d watched a little less television. Tate’s favorite show at age two was The Teletubbies. At one point I actually worried that too much Tinky-Winky, Po, Laa-Laa, and Dipsy had caused Tate’s autism. 

The tiny dropper full of occasional doubts and guilt I have over the cause of autism is usually silenced by reason fairly quickly. But there are others that badger me sometimes-- Things that are directly related to Tate’s autism. I think about the things autism stole from the other kids. Those three years of early intervention we did with Tate made me absent in my other kids’ lives for much of that time. I was here but I was not focused on much of anything besides helping Tate. They all understand how important the early intervention was. They all understand I would have done the same for any one of them. They never complained. They never rebelled. They were all helpful and supportive. I gave seventy or eighty percent of myself to Tate during that time and the other six kids shared what was left. This voice does not whisper as quietly as the other and does not listen to reason as well. Sometimes it talks in an outdoor voice and I have to get very stern with it. I reason, “What else could I have done? I am only one person. My baby needed me to help him. The kids understand. They are all turning out fine!” Then the nagging doubts and the guilt are quiet. For a while.


  1. Great blog! My son seemed quirky from birth too. I feel that way sometimes. Keep up the great work.

  2. It's not easy to raise a child with special needs, and that's why I have great admiration for those who are doing well in this journey. You’re right about realizing that no one is to blame – including yourself. Things like these are larger than life. Right now, it’s good to know that everything is doing well with you and the kids. Kudos to your parenting, Lisa!

    Jason Hayes @ DECORM

  3. Thanks for this. Someone's I just want to punch those small voices right in the throat.