A Glimpse of not giving a damn

Standing in line at Wal-Mart it was impossible not to notice the flustered young mother a few patrons ahead of me. Her hair had been thrown up in a sloppy ponytail, dark purple circles under her eyes attested to too many sleepless nights. She had a baby on each hip and more in the cart she rocked back and forth in a vain attempt to calm the crying child inside. Crying is not an accurate description. No what this child was doing was more like a cross between the cry of a feral cat and the wail of a siren. She frantically tried everything to quiet the child: singing, counting, shushing, babbling nonsense. None of it worked. The mother looked on the verge of tears herself. Directly behind her stood your average professional yuppie dressed in the yuppie weekend uniform: khaki shorts, polo shirt, and deck shoes. He made disgusted noises at the mother’s vain attempts to quiet her wailing child. Finally he looks over at his companion, dressed in the identical outfit only her polo was pink instead of blue, and loudly states “If that was my child I’d beat his butt and then he wouldn’t act like this in public.” The flustered, young mother turned three shades of red. She turns and quietly whispers “I’m sorry. He’s autistic and he doesn’t handle Wal-Mart well. Usually I leave him home but my husband had to work and we needed formula and diapers.” The man’s ire was temporarily assuaged and the mother finally checked out.

If you haven’t already guessed I was that mother. For several years it was almost impossible to leave the house without having a similar situation happen. Everywhere I went I was judged as a mother. Some people would just roll their eyes, others would actually try to be helpful and offer advice, and some were like the man in the above story. For the most part we stayed home. Even going to relatives was difficult. Family members did not always understand or accept that we were dealing with something more than discipline issues. All in all, I was judged by so many people. I felt compelled to explain my child’s behavior because then it wasn’t my fault. Then people looked at me with pity instead of judgment. “You poor dear, this must be so hard. You are doing a good thing” It made me feel better about myself. Then one day I finally came to understand something very important: It didn’t matter what anyone thought!! Not the guy at Wal-Mart, not the waitress at the restaurant, not the guy at the gas station. It wasn’t their business why my child acted the way he did and I certainly did not owe them an explanation of his behavior. It didn’t matter whether or not my family agreed with the diagnosis or if they thought my child’s “issues” were because I did not spend enough time with them (yes a family member actually did tell me this….me the stay at home mom with no car). What truly mattered was that I was doing what was right for my child. That I was doing everything in my power to be the mom to my child that he needed. I call this my lesson in not giving a damn.

I know that can sound arrogant but that isn’t the way I intend it. For me it was freeing. It was so freeing to stand in Wal-Mart and hear the snide comments and really not care. It was freeing when I got the emails with the newest “causes for autism” and all the things I should be doing differently to just delete them without feeling guilty. I no longer had to explain, I no longer had to apologize, and I no longer had to feel guilty or sorry. I no longer wanted people’s approval or pity. So very often, as parents of special needs children, we make it about us. I know I did. I felt embarrassed by my child’s behavior, I felt judged, and I felt pitied. But this isn’t about me. It’s about my child. It is about finding the best treatment available for my child (whether others agree with it or not). It’s about being the parent God has called me to be to my child.

One of the first pieces of advice I give to parents when given a new diagnosis for their child is this: This is not about you. It will affect you. It will change your life but this diagnosis is not about you. It is about your child. Your extended family may never understand, friends may be uncomfortable around your family and not know what to say. But it is not your job to make them understand. It is not your place to make them comfortable. All that energy you expend trying to get others understanding is wasted. This advice was hard won. It came from oceans of wasted tears. This journey, this amazing life changing journey takes all your effort and energy. Your child feels it when you are ashamed of them or embarrassed by them. One of the most important things you can do for your child is to accept them, really truly accept them as they are. Once they feel this from you they will be open to the other steps and therapies you will try. I have four children on the spectrum and one husband. This journey has been different for each of them. It has been a learning experience for me. God has used this journey to change me in so many ways and I will be eternally grateful for it. The first step for me was this one, this very hard one. Sometimes it is great to just not give a damn.