for parents and caregivers of children with autism
Stepping Stones is a trail guide of hope
for all the parents and caregivers of children
who appear to have advantages, but somehow do not;
who want to be happy and fit in, but largely cannot;
who yearn to be treated respectfully, but usually are not.
See why: tinyurl.com/4c6bxw4s
not when bullying is tolerated
Our son, who has autism spectrum disorder (ASD), was often an inadvertent contributor to his problems by his lack of social savvy—but not always. Bullies can rise up anywhere and everywhere. And at any age. (Apparently, bullies never grow up.) They may even take the more insidious and impersonal form of institutional and systemic bias.
Children with physical, developmental, intellectual, emotional, and sensory disabilities often seem to have a prominent “Kick Me” sign on their backs, a seemingly irresistible target for the bullying mindset. Try as our son might to blend in or stay unnoticed, his “marching to a different drummer” routine attracted attention—especially from those kids who judged him ripe for their mocking, harassing, teasing, taunting, badgering, and bullying.
Often, bullies’ exploitive route is through their victims’ lack of peer support. Having friends can prevent and protect against bullying. But children with special needs often fail to make friends, and may have difficulty getting around, trouble communicating and navigating social interactions, or display signs of vulnerability and emotional distress. All of these challenges mark them as “different,” and increase their risk of aggression from bullies.
Stepping Stones: our pathfinding adventure with Asperger’s introduces the concepts required to continue organizational change. And to all parents and caregivers of children with ASD, this true tale offers pragmatic guidance, self-help encouragement, and real reason for hope. tinyurl.com/4c6bxw4s
While the drama was undeniably amusing at the time, it’s a great example of one of the mistakes we made—and the lessons we learned—in nurturing our son’s personal development as he grew up.
“I’m just going to go across the road and… DIE!”
So declared my then eight-year-old son, who has Asperger’s Syndrome.
What caused him such overwhelming agony that he felt he simply could not go on?
I moved a forsythia bush in the yard from there to over there.
And while the drama was undeniably amusing at the time (and required pains to hide it), it’s a great example of one of the mistakes I made—and the lessons I learned—in nurturing my son’s personal development as he grew up.
As mainstream recreational programming widens to welcome more children with special needs, and the real opportunities to raise these children’s future prospects grow, I humbly offer some of the simple strategies my wife and I learned in raising our young son, which may help in providing a more nurturing aspect to your programming.
1 Practice coping mechanisms. Aspergers kids often suffer from sensory overload, detecting every sight and motion, every sound and smell, every texture and sensation. Our son was unable to tune out the background clamor most people don’t even notice. Because it’s not possible to control all surroundings, we introduced and practiced coping mechanisms that helped him manage the overload. Things like deflecting anger with humor, providing a safe place of retreat (very important!), and teaching him how to read facial expressions helped him cope when tensions ran high.
2 Pick Your battles. Because he needed social interaction, but would never choose it on his own, we limited the battles on that front to just two that did him a world of good: Boy Scouts with its outdoor adventures; and marching band with its required precision that appealed to his mathematical mind. Knowing what’s really important, rather than what’s merely a preference, helped us focus our care where he needed it most, and avoid needless confrontations and frustrations.
3 Provide stability. Aspergers kids love their ruts. That’s where they’re comfortably ensconced. They’re happy there, with no need to ever change. Routines are important. Rules are important. So as much as possible, we provided stability at home with our routines and consistency in enforcing rules.
This youngest child of four shared household chores with his siblings. Saturday was yardwork, Sunday was church. Every evening at 5:30 the whole family sat down together for supper. And after we were done eating, we lingered together to share in a variety of subjects—from listening to a piece of music to discussing current events to admiring artwork, or something from science, history or literature. One springtime we read the entire book of The Adventures of Tom Sawyer aloud in small segments after supper. Provide stability.
4 Prepare for changes. You thought you hated change? Try being an Asperger’s kid with absolutely zero tolerance! Here was my mistake in moving the bush: I never warned him. While he was at school one day, I decided on the spur of the moment to transplant the shrub. It was already a done deal when he got home. NNNOOOO!! He simply could not cope with its suddenness. His life was over. The only thing he could do was to go across the road and die!
We learned to prepare our son for changes that will come. One year, we had a great three-week vacation at the end of the summer. When we arrived home, we realized, “oh, yeah, school starts next week.” What! A! Disaster! From that episode we learned to prepare him for transitions. “Son, school starts in 4 weeks, 3 weeks, 2 weeks, next Tuesday…” “You’re going to have to start wearing pants again soon instead of shorts, because the days are getting colder and you’ll freeze your buns off!” Prepare for change.
5 Persevere in unconditional love. No matter the depth of his meltdowns or how he acted out, our love and acceptance as a vital part of our family was never questioned. We approached it from this truth: “Son, you have an amazing gift in being able to view the world from a unique perspective—and you will find purpose in it. Hang in there. We love you intensely!” Persevere!
So for those who have or are working with young children on the autism spectrum, I offer this encouragement and hope: My son —the physicist with a Master’s degree in nuclear physics!—is now working two research jobs with Penn State. Hang in there! It’s hard to predict the ultimate destination of these kinds of adventures. But you have both the opportunity and the ability to make a difference in these children’s lives and their futures. My absolute best to you!
Agonizing childhood Christmas tradition develops character
When I was a little kid, it was a time-honored tradition in my church that all the children of the Sunday School classes would “Say Pieces” at Christmastime and Easter.
Such were the agonizing times of Kid-dom. Whether it was memorizing and reciting a scripture verse or short poem, or playing an instrument, singing a song, or even performing a bit of drama, it was a stressful time on Center Stage.
Not that it was a big one. But that didn’t matter. It was all the mandatory preparation and the grown-ups’ stern warnings about getting it right in front of everybody. It was a big deal.
… Not that I can remember any piece of any of the Pieces I ever recited…
But many of them were quite similar to the now well-known declaration of Buddy the Elf: “The best way to spread Christmas cheer is singing loud for all to hear!” You know, when you’re a little impressionable kid, that’s really a huge pile of words to get just right.
I do, however, remember how we got to dress in plaid bathrobes to play Shepherds Abiding in the Fields. And how, one Eastertime, my cousin wore his green plastic army helmet to play a Roman soldier.
The annual production spared no one. Even the really little kids, the ones who were too little to even know what was going on, were sent out there. This cherished image is of my little sister Ann and her friend Jimmy, who paraded holding hands all the way from the staging area behind the upright piano to the platform, faced the audience with the signs hung around their little cherubic necks, then returned to wild acclaim.
Our individual and collective behaviors solicited both pride and embarrassment in our parents. For our grandparents and all the other old people, the spectacle was highly entertaining.
Afterwards, back in the classroom, we’d be rewarded with a small box of mixed chocolates and an orange from our Teacher: Presents! Next up: the real deal with Santa at home—yeah!
Despite all the trauma however, the ordeal developed character—not that we cared. But it did force us into such real out-of-the-comfort-zone growth experiences as public speaking, addressing an audience of peers and authority figures, overcoming fears and nervousness, exercising brain power, learning new information and how “practice makes perfect.”
I also remember how one little girl learned the power of a bribe. (Or shall I say “incentivized reward.”) All through the rehearsals, she refused to go on stage. But then her mother discovered just the right enticement in the promise of a special lollipop. (Did she bring some for all of us?) When it came to it, the girl delivered forthrightly, then ran directly to claim her reward from Mom hiding behind the piano.
After all these years, I’ve come to value sharing My Piece. It’s proclaimed a little differently now, and disseminated on a blog in a way no one could have imagined so long ago. Yet the sharing of our thoughts, concepts, ideas and ideals in a public forum remains a noble and cherished cause of personal expression and communal liberty.
So I now choose to share with you one of my favorite Pieces this Christmastime. It was written by the Nobel Prize winner of Literature in 1928, Sigrid Undset:
And when we give each other Christmas gifts in His name, let us remember that He has given us the sun and the moon and the stars, and the earth with its forests and mountains and oceans—and all that lives and moves upon them. He has given us all green things and everything that blossoms and bears fruit and all that we quarrel about and all that we have misused—and to save us from our foolishness, from all our sins, He came down to earth and gave us Himself.
And as Ann and Jimmy so endearingly express: Merry Christmas and Happy New Year!