Parents of autistic children often wear a mask. We don't let the world see our weakness. We don't let ourselves breathe or lose focus on the goal to overcome, the best we can, the challenges we face with our children. We often feel the second we lose focus, we are not only judged by others, but we are letting down our children with autism.
Behind the mask, we are always talking about what support services are needed, how much they cost the state or a health insurance company, and what kind of programs are offered at schools to help our children. We surmise that strangers who stare in judgment could never really understand why a child has a meltdown in a restaurant or store, unless they walk in the shoes of the parent struggling to mask the embarrassment or despair we feel from the whispers. We hear the complements on how great we are as parents and advocates because we are there for our special needs child. We really don't want empathy. We are doing what a parent who loves their child should. Many don't see the exhaustion, tears or discouragement we feel or the applause we give our children for the slightest sign of momentary success. That success is usually defined as our child following a simple a direction, like putting a plate in a sink after eating or putting on socks before their shoes.
I talk about those successes a lot in this blog. I often mention, my son, Cash'an, trying hard not to make him the poster child for this devastating disorder that steals so much from the little pleasures of daily life. They are stolen because all of the multiple steps we take every day to complete a task are overwhelming. The truth is autism and the affect it has on our lives is unbearable sometimes for parents, as well as siblings, grandparents and even friends, if they stay close enough.
We parents never stop thinking about our children and how they are getting through the day because every hour is different — a new noise, sound, person or thought can cross into the world of our child that we have no control of. We are at the ready, waiting to respond to their reaction or behavior as a result of it.
Still, we try to stay positive and not wallow in the tremendous challenges. Sometimes we can't stop our child's meltdown because they can't communicate their pains, desires or even their joys. Autism wins when we can't always take our child to a simple amusement park for the rides because they may react to the screams of excited patrons, or for a taste of cotton candy because it looks too different from anything else they eat. Autism wins when it wakes up a parent in the wee hours every day because our child's brain does not shut down to stop obsessive routine behavior. We wake up with them to make sure they are safe. We, in turn, don't go back to sleep even if our child does.
This blog is not meant to discourage. It is meant to acknowledge the other side of the reality that parents are human with valid emotions and moments where they consider giving up the fight to let professionals to take the baton, if even for a moment. It's Ok. We are not bad or incompetent parents because of that. We are parents who love our child so much that we are willing to call in reinforcements when necessary so that we can take a break, re-arm ourselves, and keep giving our children with autism a fighting chance to live a quality life.
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