Raising a child on the autism spectrum, I’ve noticed, that no day is the same. Each 24 hour period presents unique and challenging circumstances, but I’ve learned three lessons that offer me strength and guidance through any obstacle. None of the tips involves changing my son; they all require a change in me.
PUT THE TAPE MEASURE DOWN. The first time my son said, “Bye-Bye” I was as happy as any mother of a one-year-old child could be, even though my son was four. Initially, I measured my son’s progress against the stories of his typically developing peers. If someone in his age group performed at a certain level, then it was failure if he didn’t do the same. It was failure if it wasn’t the same statistical success that neurotypical children had. Honestly I could not see a ruler, yard stick, or tape measure without thinking that somehow we were coming up short. Letting go of those comparisons was extremely difficult, heart-breaking; holding on to them was even worse.
Then came the day he correctly spelled his name using magnetic letters. I cried. I didn’t know that he knew or even recognized his name, and it made me wonder just how much he understood but was unable to articulate. How long had these random letters been trapped in the maze of his mind searching for the exit door? How much effort did he use to be able to spell his name? That single moment, nearly two years ago, forever changed my perspective.
My son is in a race with only one competitor, himself. His progress is solely based on what he’s done before and what we and his network believe he’s capable of. We live much freer lives this way and every bit of progress he makes measures up.
CELEBRATE EVERY INCH; THE MILESTONES WILL COME. As with the start of any journey, you start counting down the miles as soon as you know the destination. When our son was diagnosed with autism though, our road map seemed to point nowhere or maybe it pointed everywhere, and there was no clear cut direction. One thought and theory intersected the next and we weren’t sure what to think of his future. With many questions and concerns in tow, our family began traveling one inch at a time.
My husband and I, along with my son’s team of early interventionists, and therapists, formed a different map with new roads but kept the destination the same; that my son would reach the point that he could communicate well and interact socially. Every spoken word, be it a whisper or a shout, was an inch of progress. Every eye contact made was an inch of progress as was every letter, number, shape, color, person, and thing that he could identify.
Every milestone is first measured by the inch. Every race is run a single step at a time. That is the beauty and lesson of the journey.
RELAX… YOU’LL NEVER HAVE EVERYTHING UNDER CONTROL. On one particular Sunday there was something unmistakably breath-taking about watching my son usher at church, especially because we had no idea what he was doing, especially because he’d never shown an interest in this uniformed group of people before now, and especially, ESPECIALLY because we were visitors! Gasp!
If there is one thing having a child on the spectrum has taught me to do, it is to always have an escape route. The first thing I need to know when entering a place is how to exit it. I knew exactly what I would do if my son started having a meltdown; I knew I would head straight for the double-doors. I was prepared for that. I was not prepared for his sudden journey down the center aisle nor was I prepared for the congregation’s reaction. There were over 100 people making up the audience and they were joyously fanning us while telling us, “Sit down. He’s okay. He’s fine,” and surprisingly he was. There, center aisle toward the back double-doors stood our son Grant, who had positioned himself next to one of the ushers and was holding her hand. Two awesome things had happened. My son made a hugely successful effort socially, and complete strangers had shown understanding, perspective, and sensitivity, helping us through what could have been a very difficult space. I realized the absolute worst thing that could have happened… didn’t.
It’s been said that if you can’t change your situation, change the way you approach it. These three lessons have taught me to do that. They have shown me how to slow down and live in the moment: not behind it, not in front of it. When I am truly present and willing to focus on the lessons RIGHT NOW has to teach the future seems less scary.
When you consider your own personal challenges, what single lesson gets you through?
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Sarena James is a writer and enjoys the sanity that brings. When her son was diagnosed with autism, she started a blog www.onaisle9.com, which became her platform to advocate for families of children with special needs. It serves as a forum for conversations and a place to exchange ideas… judgment free.
A married mother of three beautiful children, Sarena’s other passion is theater and she has served as theater coach and consultant for the public school system. When she’s not on stage you may find her script writing for future performances. Originally from Aurora, Colorado, she is a Paine College graduate. She and her family currently live near Charleston, SC. Follow her on Twitter @OnAisle9.