A Mother's Guilt

It is an emotion that many parents, mostly mothers of autistic children struggle with, some openly, others hold it within, but it remains their self-induced cross to bear: guilt. The guilt of a mother, whom, through her own eyes believes she brought this curse upon her child, becomes all-encompassing. As most mothers do when their child becomes ill or when their child is somehow harmed, the mother of an autistic child asks herself, “what did I do wrong? What could I have done differently? How could I have done that to him?” Through the eyes of a tortured mother, she looks at her child and sees her destruction, the pain and suffering their child endures. But what if she looked at her child through their eyes? What if she could see their world, understand them and possibly find the path to forgiveness?

I think it’s plainly clear what “mistake” we’re talking about here, and many mothers have probably played the scene out in their minds over and over: that fateful day when you strapped your happy, bubbling baby into the car seat, and drove down to the doctor’s office. You cuddled and soothed your child as they were first pierced with that thin steel and injected with a trusted serum that was meant to protect them from crippling diseases that could ruin their lives. And shortly thereafter, you watched the child you once knew slip away, replaced by an affectless shell. It’s a traumatic experience for any mother to live through, and self-blame is not far behind. Now, many mothers attest to the fact that their child did not begin to show symptoms of autism until they received their shots, and although there is absolutely no scientific evidence to support the notion that vaccines alone cause autism, we cannot fully rule out that vaccines may play a role. While the jury is still out, evidence is being presented that suggests viruses might be the cause, transmitted through the vaccines. More evidence is coming in support of a genetic basis as well, and there’s a good possibility it might be a combination of the two, perhaps that the genetics lay the foundation for autism and wait to be triggered by some element of the immunizations. But for guilt-ridden mothers, whatever the cause, in their minds nothing changes the fact that they allowed their children to be given these life-altering shots.

For years we’ve been told these shots are critical to the health and well-being of your children. The government, the FDA, medical boards, and doctors have all sworn to the benefits of vaccines. No child can enjoy public education without them. And so many children have been vaccinated with no health ramifications at all. Why would any mother doubt them? The reality is immunizations have become a crap shot, some kids develop autism, some don’t. If you don’t vaccinate, you risk other life threatening illnesses. These mothers made what is becoming a most difficult decision with unfaltering trust in their pediatrician. It was this false confidence that ultimately laid the burden on their shoulders. Though all rationale argues against their self-inflicted torture, a mother’s heart does not work in rationality.

I personally do not have any children, let alone an autistic child, but I can fairly imagine the pain a mother grapples with on a daily basis; I’ve seen it deeply lined in the weathered faces of parents just praying for some semblance of a normal life for their child. For many parents, that life is a fantasy; autism is the death of a dream. Every parent has that dream, a collection of hopes and wishes bridled with anticipation and excitement. Their first words, their first steps, that first time you hear I love you, sports, activities, school assemblies, college, and building families of their own are milestones that should have been guaranteed. For parents of autism, the guarantee fell through. Dreams of the future turn to just trying to survive a day in the life of their child, the loss of hope turns into a deep and constant ache.

Mourning the loss of this dream and trying to cope with their own pain, parents are doubly weighted beneath the pain and frustration of their child. Tantrums and fits, constant repetitive behaviors that interrupt their daily functioning, physical pain, frequent illnesses, limited means of communication, and isolation are all burdens the autistic child can carry. Being in pain as a parent is immeasurable compared to watching your child in pain. And the self-blame continues. Parents, mothers, look at their children and think, how he suffers, look how sad he is, look how she screams and cries, my poor baby, this is no life for them.

I often wonder, however, if these children are as miserable as we think they are. Yes, there are hardships and burdens thrust upon them, at very young ages, no less, but do they know any different? Can you truly miss what you never had, what you never knew could be? I think about people, adults and children alike, who have had some unexpected circumstance befall them, whether an injury or illness that changed their lives or an anomaly that affected them since birth, which made their lives exceedingly more difficult. How often we look at these people and pity them, thinking, that poor man, now stuck in a wheelchair;, that poor baby, how will she overcome that deformity? And yet, time and time again we click on the TV or the computer and see some inspirational story of someone overcoming the odds. They’ve learned to survive, they’ve learned to succeed, shattering their obstacles, and the one constant, resounding message is “I don’t feel sorry for myself, don’t feel sorry for me either”. They found the light in a place of darkness, and don’t think your child can’t do the same, that they don’t do it every single day.

In my time, I saw many children angry, frustrated, scared, and in pain, but I also saw the good moments: dancing and singing for no other reason than their own joy; laughter, whether or not anyone else got the joke; play time on a swing or a trampoline; a quiet peacefulness with a coveted object: a favorite blanket, a puzzle, a stuffed animal, tiny pieces of paper to toss in the air and watch float gently to the floor; those fleeting moments where they’re able to let others hold them, cuddle them, and squeeze them. The simple things make any life worth living, including theirs. In spite of the hard times, I don’t believe any of these children would choose death over their own existence. Many of them wouldn’t choose a cure over their life; as so many higher functioning individuals argue, they are happy as they are. Another child classified as severely autistic, when finally able to communicate with her family via computer, expressed a desire to have the same experiences as ‘normal’ kids. She wrote that she wanted understanding from others, to be accepted for who she is, idiosyncrasies and all, but never said she wished she wasn’t autistic.

As parents, the pain of having a sick child can consume you, and you can project that pain onto your child, believing that they must be suffering tragically when in reality it is your suffering you need to overcome. You see your children’s pain; you struggle with the guilt in believing you caused it. But in reality, these kids are made of steel. They get up and face the day, they endure the bad times, and they find happiness in the good ones. Are their lives the fairy tale we all wish our kids’ lives could be? No, but they are much stronger for it, and they don’t need pity. They have and will continue to thrive. Draw on their resilience, take a lesson from your little ones; they’re playing the hand they’ve been dealt, why aren’t you?

“Keep your face to the light and you cannot see the shadow”- Helen Keller