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.

I still get the recommended immunizations for my son with autism.

I got a letter this summer from Tate’s school telling me he needed to have a Tdap (Tetanus) shot before school resumed in the Fall. Last week I took Tate to get the shot. Before you gasp in horror because a mother of a kid with autism is still getting their child immunized, let me assure you that I have carefully considered the risks involved. I think most mothers who read all the fine print on the paperwork involved in getting their children’s immunizations, want to grab up their children and run out of the office without the shots, including the mothers that do not have children with autism. However, if we all did that, even if a small percentage of us did that, then the diseases that had been eradicated by childhood immunizations would become common amongst us again. I have been hearing that some of those diseases are actually on the rise because moms are refusing to immunize their children. 

I did not tell Tate about the needed shot until we were ready to get into the van. You see, had I told Tate about the shot the hour before, the day before, the week before, the month before, he would have become sick with anxiety and our whole family would have suffered the whole time. We were going to see the latest Disney movie that was just released that day. Yes, we have to go the day of the release to avoid a huge amount of stress as well. So, being the calculating and conniving mother than I am, I scheduled the doctor appointment for ninety minutes before the movie time. I am no idiot though. I made sure there were other movie times available if our doctor appointment did not go as scheduled or planned. I told Tate that we would be visiting the doctor’s office before the movie so he could get a needed physical and a shot. He was very nervous but did not meltdown. I think the anticipation of the movie was definitely in my favor.

The pediatrician that Tate has seen for years has recently retired. We went “potluck” at the practice and met a new doctor. I had no idea when we made the appointment, but he is the son-in-law of our beloved pediatrician who just retired! This guy is a keeper for sure. He was great with Tate. He spent a long time talking to Tate on his level and listening to Tate’s long discourse on the movie we were about to attend. Tate talked so much to that doctor that I actually said to the man, “He just said more to you than I will hear in a whole day sometimes.” Tate does that when he is nervous or excited sometimes. He becomes a motor mouth. If he would talk about something other than a movie when he had these language events, I would…. Well, I don’t know what I would do. I would definitely be happy. I watched and listened to every word Tate said to the doctor. I think he talked at least five minutes, probably longer, and the doctor patiently listened, looking at Tate. Tate looked at the floor. He looked at the wall. He looked out the window. He never once looked at the doctor. When the doctor left the room I told Tate how proud I was of him for all the language he used. Then I gently reminded him to look at people when he talks to them. We go over this often. I know it is so hard for him and every other person with autism to make the eye contact but I still keep hammering away at it.

The doctor gave Tate a physical and was very patient and gentle as Tate squirmed and flinched. (Tate hates for his skin to be touched, especially his belly. See post: "Don't Touch My Skin") The doctor suggested that we also get immunizations for Meningitis and Hepatitis A. He explained what each shot would protect against. He seemed just a bit defensive to me when he recommended the additional immunizations. I told him that I was unlike a lot of autism moms and I did not believe that immunizations had anything to do with Tate’s autism diagnosis. I had seen the “differences” in Tate at birth that I would later learn was autism. The doctor seemed somewhat relieved and we talked about some of the early signs of autism I saw in Tate. I agreed to get all three shots while we were there. I do not believe that immunizations caused Tate's autism, but I do believe immunizations will keep him from becoming ill with terrible diseases if he is exposed to them. 

The doctor warned me that one of the shots was somewhat painful, compared to the others. The nurse who gave the shots was fast and efficient. The first shot barely caused Tate to flinch. The second must have hurt a little more as he jerked a bit. The third must have hurt very much as he hollered out. He did amazingly well. When he is really scared (and this usually happens at doctor offices or dentists) he says, “I love you, Mom” over and over and we have a sort of routine. I put my forehead on his or my cheek to his cheek and he leans into me as I try to keep his eyes off the scary object(s) in the room. I’m sure we make quite a sight, my 6’2” man-child and I, as we awkwardly share our affection for each other. As awful as it is to say: while my heart melts because of his distress, I always relish the short amount of time he needs me to comfort him. I love him so very much and he seldom has needed me to connect with him like this in years. When he was a toddler and even a preschooler he still looked to me for comfort but in the years since he has turned to his self-stimulatory behaviors to calm himself. Pacing on his toes, twiddling his fingers, stiffening his arms, do for him what I cannot usually do.

I can never visit the pediatricians’ office without remembering the day I took two-year-old Tate in and sat him down on the rug in the little patient room. I looked the pediatrician in the eye, said, “There is something wrong with my baby” and burst into tears. That doctor handed me a tissue, watched Tate play for a while, and asked me what I thought was wrong. I said, “I think he has autism.” He replied, “I think you are right.” Before I left that office I had the names of several people I needed to call to begin the early intervention that would help us so much, the early intervention that would help me wage a war against the aloofness that had taken my little boy’s personality hostage. I remember almost every detail of that day. I love him just as much at 6’2” as I did that day so many years ago.

Then...

...And Now

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