Sunday, August 4, 2013

Why Autism Moms Act the Way They Do

This week, Laura Shumaker, who, like me, is the mom of an adult son with autism, published a blog article entitled “Why Autism Moms Act the Way They Do.” [To read this article, click here.] She described crying spontaneously, joining book clubs but never attending, being socially awkward, and bristling when people compliment her or minimize her situation. While I appreciate her candor in sharing her feelings, I found that as an autism mom I don’t share any of those experiences. A common saying about people with autism is that if you have met one person with autism, you have met one person with autism. Perhaps the same could be said for their moms: if you have met one autism mom, you have met one autism mom. On the other hand, I have found that the autism moms whom I have met primarily through online support groups or through introduction by mutual friends seem to share many of the same qualities I have developed as an autism mom. While I know my experience may be different than others, here is my version of “Why Autism Moms Act the Way They Do,” or more accurately, why this autism mom acts the way I do.

1. Guilt is a big motivator for me. I’m always thinking of what I should have done, what I didn’t do, what I should be doing, and whether I’m doing what I should be doing. I’m often my own worst enemy wondering whether Alex’s autism is somehow my fault or whether I could have done something to make the obstacles he faces easier. My mom, who knows me better than anyone and loves me more than anyone, constantly tells me to get off my case, meaning that I need to stop feeling guilty for what I’ve done or not done. However that same guilt makes me constantly seek ways to make Alex better not just to help him but maybe to atone for anything I think I’ve done wrong along the way.

2. Worry is a constant nagging feeling for me. Along with feeling guilt, I spend a lot of time fretting about Alex’s behavior, health, and future. Do I need to be stricter with him and hold him to higher expectations? Do I need to cut him some slack and be more patient with his issues? Should I take him to the doctor, or should I wait and see if symptoms improve on their own with time? What do I need to do to prepare him for life? What will happen to him after I’m dead and gone (hopefully after living a long and productive life as his mother)? These feelings of uncertainty haunt me often.

3. People who complain constantly about their typical children annoy me. When parents of “normal” children whine about their kids not doing their homework or having messy rooms or being lazy, frankly I want to shake them. Do they realize how lucky they are to be dealing with rather minor issues? Certainly, I can understand their frustration and wanting their children to be the best that they can be, but I would be thrilled if my biggest concern were Alex’s messy room. When parents gripe about their kids, I simply bite my tongue and say nothing. I suppose that having a special needs child helps put things into proper perspective.

4. Research is my favorite pastime. Thanks to the Internet, I have access to all kinds of medical studies and data, as well as an opportunity to compare notes with other autism parents around the world. Many of the things I’ve learned through research have been beneficial to Alex, and I’ve also been able to share what I’ve learned with other parents who are dealing with similar issues. Through my reading of various medical publications, I have learned terminology that allows me to communicate effectively with Alex’s doctors. His current doctor seems to be pleased, for example, when I mentioned gamma linolenic acid as an anti-inflammatory essential fatty acid after he suggested evening primrose oil for Alex. When I ask questions or make comments that include medical jargon, he enthusiastically nods his head and says, “Exactly!” that makes me think he enjoys our conversations almost as much as I do. I’m thankful that he seems to appreciate the research I’ve done over the years and is always willing to discuss ideas with me to ease my worries and guilt.

While I can only speak for myself, I suspect that I’m not the only autism mom who exhibits these characteristics. Moreover, I also suspect that some of these qualities are common to all moms. A few weeks ago, I enjoyed a milkshake moms’ night out with two of my close friends, one of whom is the working mother of an infant and the other who is a stay-at-home mother of two young children. Even though our kids are at very different levels of development and our balance of career and family are different, we find more commonality than difference. All three of us share a devotion to our children that surpasses anything in life. We worry about them, feel guilty about things we shouldn’t as we question our choices, find whiny parents annoying, and search the Internet and books for guidance in raising our kids. Motherhood is always challenging; autism just adds a few unique challenges. However, through the years, dealing with obstacles has developed my faith in ways I could never have predicted as I continue to learn to choose faith over fear, easing guilt, worries, frustration, and the intense need to know why things happen. While I constantly pray for Alex’s healing, I am thankful for the faith that sustains me as well as the reassurance that in the end everything will be all right.

“Let us think of ways to motivate one another to acts of love and good works.” Hebrews 10:24


K. C. Wells said...

Your mom is right, my friend. ;) I love the idea of choosing faith over fear. That really gives me something to think about!

Pam Byrne said...

Hi K.C.,
I'm still a work in progress, so I'm working on getting over guilt and choosing faith over fear. ;) Thanks for your sweet note.