In honor of my son, Joel, for Autism Awareness Month.
Accepted. Acknowledged, recognized, endorsed, believed in, affirmed. This is the very beginning of the alphabet for parents of children with autism. We come to accept our children for who they are. We acknowledge not only their challenges, but their gifts. We recognize their talents and applaud their strengths and abililties. We endorse their gifts in all of the meetings we attend on their behalf. We believe in them, 100%, and we affirm them with our words, with our actions, and with our love, regardless of the challenges along the way.
Unique. One of a kind, single, unparalleled, incomparable, distinctive, extraordinary, unprecedented, in a class by itself. I’m sure you’ve heard the adage, “Meet one person with autism and you’ve met one person with autism.” Autism covers a wide spectrum of abilities/challenges. Every one of our children with autism is unique and one of a kind. There will never be another like my son Joel. Your child is incomparable and unprecedented. Each of our children is distinctive, extraordinary, in a class by himself or herself. Each one has quirks and idiosyncrasies that may seem eccentric to others, but to us, those eccentricities are simply part of who our child is.
Tantrum. Outburst, fit of temper, blowup, eruption, freak-out. Any parent who lives with autism can tell you stories about tantrums. For children (and adults) who are unable to communicate their wants and needs, tantrums become a way of communicating the uncommunicable. Parents of children with autism must continually work to understand what the behavior is saying. Is my son experiencing pain? Is my daughter hungry or tired? Were her feelings hurt by a friend? Has his frustration built up like a pressure cooker, and that’s why he’s exploding? Finding ways to help a child communicate is part of the job description of a parent of a child with autism. At the same time, parents must learn to manage tantrums at home in the car, at the grocery store, on the playground. Some of these outbursts can involve self-injury, and some result in aggression toward others. Understanding that tantrums are not a sign of bad parenting is the biggest gift the rest of our community can give us.
Indelible. Leaving a lasting impression, fixed, permanent, enduring, unforgettable, unfading. Most of us have indelible markers in our homes, right? We mark our children’s clothing and hats with their names, knowing that it won’t come off in the wash. Autism leaves an indelible mark upon our children as well as on our families. Treatments and services can improve our children’s symptoms and ability to function, but there is no known cure. But just as autism is indelible, so too is the impact our children make on the world. Our children leave a lasting impression on those who take the time to get to know them. Their light shines, unfading and fast, for those who extend a hand of friendship. My son has had some unforgettable melt-downs, but more importantly, he has left an indelible mark upon the hearts of those who have chosen to get to know him.
Sacrifice. Give up, trade off, forfeit, let go, surrender, relinquish. Sacrifice is a word parents of children with autism know well. There are many things we give up in order to access all of the services our children need. We trade off time and dollars as we tirelessly fight for a better life for our kids. Some of us forfeit family vacations or weekly date nights with our spouse. Many of us surrender our children to God when we come to the gut-level realization that we are not in control. When we relinquish our ability to control outcomes for our children, we gain the freedom to love and enjoy them simply for who they are, not for what they accomplish. And in that freedom we are re-energized to carry on with therapies and interventions that bring hope for a better life for our kids.
Mighty. Strong, powerful, forceful, potent, commanding, influential. Mighty is a word I usually use for God. But I have come to see my son, Joel, who is now 32 years of age, as a mighty, strong, and powerful force for good in his world. Because of my son and my need to make sense of his disability, I have struggled with God and found the meaning I was searching for. Joel’s life has meaning simply because he is Joel. God loves Joel unconditionally, just as he is, with all of his quirks and eccentricities. Amazingly, Joel loves me unconditionally, just as I am (and there are many days I am not all that loveable). Joel is an influential and commanding force in his sphere of influence, as he extends unconditional love to everyone he knows. Joel has taught the Body of Christ what it means to worship with the body as well as with the mind. Joel is the inspiration behind four books and countless articles. His story has circulated the globe. Because of Joel, his father and I helped to establish a farm for adults with autism. When that didn’t turn out to be the best place for Joel, we helped set up a “day program without walls” for Joel in our community (the first in our county), encouraging other families that anything is possible for our kids, even those with challenging behaviors. Our children are mighty in love and powerful in influence.