Years ago, I remember being in a public TV store, a place where you could buy a “Bob the Builder” board book or plastic cut-outs of the solar system or a gyroscope for the kids. (I once bought a Sigmund Freud action figure there, and it still stands on a shelf in one of the kids’ rooms.) Do they even have such stores anymore? Ours was the KPBS Store in the local mall. I know the store is gone now, and that’s just as well. For at least a year or two, I avoided that end of the mall, the scene of the one of my son’s greatest, most fantastic melt-downs ever. It was a melt-down for the ages, and I never forgot it or the people who invited themselves to get involved.
My son John was about 4 years old and he loved that store. The only thing he loved more was Christmas. Put the two together—Christmas AND the KPBS store—now you have John’s definition of heaven. Our incident took place the week before Christmas. Crowds of people milled around the store, and the extra merchandise down every aisle made it a little harder than normal to move. I had John buckled into his stroller. Boxes of games were stacked floor to ceiling, easily within reach of little hands.
Our first five minutes in the store were uneventful, because I had given John a special treat to eat. I thought, “Oh good, he’s content. I can grab that toy the nephew wants, pay for it and get out fast.” My mistake was in thinking that the treat would keep him busy and quiet. Overconfidence can be a bad thing when it comes to getting between a nonverbal child and a shinny plastic cut-out of the moon—glows in the dark, too! The treat kept John busy just long enough for me to get three-fourths of the way down one of the crowded, narrow aisles. Enamored with all the boxes and shiny toys and trinkets within reach, John could not keep his hands to himself. He reached for the moon, or I should say moons—three of them—from a bin.
I gave him a firm, “No, John.” When I took the packages away he arched his back and screamed. I knew I had to get him out. When I started to move the stroller toward the door, John dug in his feet and arched his back even further. He screamed louder. I tried to move the stroller, but with every step I took he dug in further and flailed his arms. In fact, he could knock down entire displays of carefully stacked boxes by smacking the second or third box nearest the floor, bringing down everything on top.
He managed to deep-six two separate displays.
Some people watching shook their heads and covered their ears, or they glared at me as if to say: “Wow, lady. Unbelievable.”
And then the kindness of a stranger intervened. He wore a flannel shirt over a black t-shirt and faded jeans. I remember him looking vaguely Mediterranean; he had dark eyes and dark hair. Had he been tall, I might have called him tall, dark and handsome. But he looked more like a short, foreign cab driver with two days of stubble on his chin. His eyes were soft and wide. He said: “You grab the kid, I’ll get the stroller, and we’ll get you out of here.” And so that’s what we did. I unbuckled John and held him close, essentially shutting down the human flailing machine. We sprinted out the door. I think I heard someone clap. The whole thing was a humiliating experience, but I managed to thank the man for his help. I was grateful to be out of the store.
He winked at me and offered: “You guys have a better day.”
Wouldn’t that be a great ending to the story? Too bad these stories are never quite made for Hollywood or TV.
Did I mentioned that John was practically nonverbal at this time? His expressive language was about a year to 18 months behind other kids his age. He could manage two-word requests or statements; and on a good day, three words at a time. John’s receptive language wasn’t much better, being hampered by auditory processing issues. Put those two challenges together and you’ve got a kid whose main communication skill was to point and scream. Frustration was his enemy—that’s when his language just disappeared. On that day his language went AWOL.
Even after I had exited the store, he screamed. Every step I took made him scream louder. I pulled out every trick I had in my arsenal.
“Stop it right now or you’ll be in your room for the night, mister. You don’t want that.”
“ John, you need to be quiet or no more cookies.”
“You’re in your room when we get home.”
Funny thing about auditory processing issues—parents suffer from them, too, but for different reasons. And, when we get over stimulated, our language leaves us, too.
Out of nowhere came a different stranger, a woman who made a bee line for my son. She wagged her finger from the other side of a wide hallway and didn’t stop until her finger was almost at his nose.
“I could hear you from the other side of the mall—shame on you, little boy! Now be quiet!”
Well, my son didn’t stop. He was “in the zone,” as my husband called it. What he needed was to crawl into his own bed. When he was wound up like that, I would likewise wind him up in his sheets and apply gentle whole-body pressure, you might call it a strong hug, as a quick-fix occupational therapy approach. We called it the “Taco John.” The pressure gave him the physical stimulation that signaled his body and mind to calm down, the physical closeness to me assured him that we still loved him.
I put myself between my son and this new stranger.
I think this is the moment that rears its ugly head for every special needs parent at one point or another; the moment, if you wanted to, when you could fling your child’s diagnosis at other people like a weapon.
For example: “Sorry, lady, but he’s AUTISTIC. Hasn’t registered a word you’re saying.”
The Japanese Nobel Prize-winning author Kenzaburo Oe wrote about life with his autistic son, the classical music composer Hikari Oe. In his book, A Healing Family, now sadly out-of-print (but available as a used book on Amazon.com), Kenzaburo Oe tells how proud he is that his son Hikari had become a productive member of society—a sensitive and caring person as an adult—despite severe disabilities. He said he owed this success to the efforts of the whole family, and especially to his daughter, who took the time to patiently explain to her brother—year after year, day after day—why things worked the way they did. In the end, Oe said, she turned out to be Hikari’s best ally.
I could have thrown John’s diagnosis at this intruder like a dagger designed to induce guilt. Or, like Oe’s daughter, I could have tried to patiently explain that my son had developmental issues and that we would appreciate her understanding. Oh, and sorry to have caused a ruckus.
The truth is, I didn’t have time to say anything. As abruptly as the woman appeared, she walked away just as fast, never once looking me in the eye. I took John home, wrapped him up and held on to my “Taco John” until he calmed down. Later, we ended up at the park for more therapy—30 minutes on the swing and another few rounds on the monkey bars. By the end of the day, I was drained, but I had gained some new information: don’t take John into crowded stores with little chance of a fast, easy retreat–it’s just too much for him. Don’t try taking him into stores at Christmas time, especially. At least not until he learns what is and isn’t acceptable behavior in a store.
You know what? That’s useful information to have. Any time you learn about your child, no matter what the circumstance, you’re gaining good information to have for the next day and the next. I choose to take that positive action out of any situation, good or bad.
The levels of autism in children in this country are increasing, and I’ve witnessed a number of melt-downs in other children that were more than vaguely familiar to me. Of course, not all screaming children are autistic. But it doesn’t matter if they are or not. As the stranger to other parents, I try to keep my random acts in the realm of kind. We could all use a little more of that.
The Difference Between Up and Down
I am the parent of a special needs child with significant learning differences and challenges. The other day, I went over old journals I kept about my son’s early language delay and other special needs when he was very, very young. (He’s now a teenager, almost an adult.) One entry, dog-eared and smudged, recapped a conversation I had with a speech therapist about John just prior to his Kindergarten year.
I remember that we sat uncomfortably at a low table while trying to balance on child-sized chairs. (I later learned to request a conference room for meetings.) We shared an equally uncomfortable, unbalanced conversation. Here’s how the entry appeared in my journal:
“Went to speech therapy. Went in with the Sowell book (Late Talking Children, by Thomas Sowell) and John’s IQ test at 5 years old (well within the average range on nonverbal test of intelligence). Last week she told me John didn’t understand simple, two-step directions. Made me angry! He does understand, but the language delay gets in the way. Explained my frustration to her. She says: ‘Oh, Mrs. G–John does not even understand the difference between up and down.’”
Given the therapist’s negative attitude toward John, she might as well have added, “. . . and he never will.”
When the therapist told me she was getting ready to move to another job, I decided I wasn’t going to let her transfer her negative opinions to the next speech therapist, so I made a request.
“Please be sure the next therapist doesn’t underestimate John’s intelligence,” I said.
The therapist took out a sheet of paper from her desk drawer and uncapped her pen. Pressing hard enough to almost rip the paper, she slowly and methodically wrote: “Please do not (underlined once) underestimate (underlined twice) John’s intelligence (underlined three times).”
She pushed the paper across the table to me.
“Is this adequate?” she asked and glared at me.
I had implied that she, the expert, had underestimated my son’s intelligence—which was true! (A fact that remains true to this day with certain educators.)
I found myself fighting for a simple right: to have my son be taken as seriously as any other student. Later that day as I mulled over the scene, I flip-flopped from feeling anger at the therapist to feeling despair about the overall situation. I was at odds with one of the key people who could help my son at the school district. How could she possibly think that John didn’t understand the difference between up and down? And how was I supposed to work with someone who clearly viewed me as a parent in denial and my child as mentally deficient (never mind his IQ testing)?
Having a child with disabilities or learning differences is a struggle. I felt as if I had fallen to the bottom of a murky pool of water. Up above me I could see everyone else walking around, living their lives at the water’s surface, but I couldn’t get there no matter how hard I swam. John’s initial diagnosis (later deemed incorrect) brought up so many fears and anxieties in me, to say nothing of the sudden need to learn about the IEP process practically overnight. No wonder I felt as if I were drowning.
Over the past 16 years I made a number of mistakes concerning John’s education, but I also had my share of successes. And our journey isn’t over yet as John still has two more years to go until we embark on a whole new road—transition to adulthood. I’d like to think that I learned from my mistakes and I hope to share what I learned to help others avoid what didn’t work and get a jump on what did.
I’m the parent blogger for the iepsurvival.com site. I’m writing under a pseudonym because my son doesn’t want to be identified as disabled—but that’s another blog post. I’m not a lawyer (although I learned the law), I’m not a psychologist or doctor (although I became fluent in certain medical jargon and therapeutic approaches), and I’m not a certified teacher (although I do teach my son). I’m just a parent with a background in writing and a long-overdue need to get back to her roots. I hope these stories and the parent meditations (see related tab) give you some ideas on how to better navigate your own journey and, at the very least, offer you a moment of calm reflection and inspiration.
Oh, and the difference between up and down? He gets that, and so do I—especially when it comes to stopping even the subtle game playing.
I don’t care what anyone says, but when one of my children is being discussed it is very difficult not to take it personally. So what kinds of things can you do in an IEP meeting that humanizes your child and causes the team to think before they speak?
Contact firstname.lastname@example.org to discuss ideas today!