To the Warrior Mothers of Autistic Children: I Get It Now.

5 years ago

I really lost her once. She popped around the end cap of the aisle while I was looking at clothes for her baby brother who was sitting happily in the tandem stroller. Every time I lose sight of her in a store, I start counting the grains of sand on a mental timer. If she doesn't pop back into view by the time the sand runs out, I must go find her. First, I say, "Honey, come here please." In a sing-song voice. Then, "Honey? Where are you? Can you come here please?" If I hear no answer (in the form of a giggle) I start looking. Usually, within a minute or two I find her. This happens at least every 10 to 15 minutes while shopping. Eventually, I will wrestler her into her seat in the stroller while she whines and grabs at everything and says she's ready to go home. It's exhausting and frustrating but not as bad as if I were to lose her, which I did that day.

That day I kept turning corners and I couldn't catch sight of her anywhere. I maneuvered the stroller in and out of the racks and down the nearest aisles. I stopped at an adjacent toy area where she would likely be dawdling. She wasn't. Soon, I panicked. It doesn't take long for me to panic; two minutes, maybe three.

My biggest fear is losing one of my children, especially my daughter since she is a wily toddler and prone to run. It's a game to her and an exercise in frustration for me. Sometimes, when I'm weary with exhaustion the scenarios play out behind my eyelids as I try to sleep. The moment I realize she is lost, my body jerks involuntarily from the terror and I am awake. It's the by-product of an over-tired and over-active mind.

The other mother's in the store could see the panic on my face that day and went into their helpful, mother-modes; asking questions, bobbing their heads around corners and calling her name. Ten, anxiety-ridden minutes, and one hasty Code Adam later, I found her. She was happily climbing on furniture, oblivious to my panic.

When I was in college I was a substitute teacher. One of my regular jobs was as an aide to an autistic boy named Vincent. I was nervous at first. I was 21 with no prior experience with special needs kids. Vincent was in the 1st grade but he spent most of his time one-on-one with me in special classroom. It was my job to assist Vincent throughout his day with everything from learning numbers to using the restroom. I don't know why, but Vincent liked me... a lot. His regular teacher kept asking for me as a sub anytime she needed one. I really didn't know what I was supposed to do so I just I let him sit on my lap and play with my hair most of the time. Vincent was non-verbal and communication was difficult. I had to ask a lot of yes/no questions or attempt to decode his gestures. Most of the time he looked stoic, maybe confused. Every now and again you could connect with him. It could be over the simplest thing,  a look, a song--at those moments he produced the goofiest grin and guttural laugh that you couldn't help but think he's just like any other little boy. One time, at a school-wide assembly he got very agitated. He sat on my lap, put his hands over his ears, squeezed his eyes shut and began rocking. A minute ago he had been a happy boy holding my hand following a line of kids and within seconds I watched him go somewhere inside himself. I didn't know what to do so I just sat there with my arms around him, rocked with him until it was time to leave. I only substituted for Vincent for a year and only three or four times, but he was memorable.

April is Autism Awareness Month. OWN, The Oprah Winfrey Network aired a documentary on called, "Autism: The Musical." The film followed a group of autistic kids and their families through a six month program wherein they learned to perform a play. I was riveted, mostly, because of the mothers. What warriors these women were. Most were divorced and one was in the midst of a separation. Divorce rates for parent's with autistic children has been quoted as high as 85-90%.

These women devoted their lives and many sacrificed their marriages for these kids. They cried, they got angry, they looked worried and frightened and my heart broke over and over for them and their pain. There is nothing they would not do to connect with their kids even if it meant their own health and wellbeing. One woman made the comment that she knew her daughter was in there, she just needed to find a way to find her. At that moment, I knew.

Just the thought of losing my daughter can make my body react involuntarily in terror. I cannot imagine feeling that way everyday when you look into your child's eyes. Two minutes of losing my daughter in a department stores can incite panic in me. What must losing your child inside themselves feel like? You can see them, they are right in front of your face, and yet they are gone into another world and the only person on the planet who cares enough to go and find them is you, their warrior mother... at any cost. I can strap my daughter into the stroller and find comfort in the fact that she's there, safe with me. If that fails, I can enlist other mothers and call a Code Adam if need be. There are no such devices for these moms. They are mostly alone. They have fleeting moments, glimpses of smiles and safety inside a mostly confusing, stoic world.

I blink back tears just thinking about that kind of strength.

When I made my life's vision board two years ago I included this:

Read the rest at http://shannonlell.com/2012/04/24/to-the-warrior-mothers-of-autistic-kids/

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