GO INTO THEIR WORLD: Reaching the Hidden Child
Jonathan was 18 months old (with Down syndrome) and now refused to learn anything. He stimmed and mentally “went away.” He was not autistic, but he was trying hard to imitate it. He just didn’t want to be taught, and had found a way to be “outta here.” He would, for instance, touch any small hole he could find, and while repeatedly touching it, would stick out his tongue and suck on the tongue. This is a tactic he used to travel away from the present; he didn’t care where, as long as it wasn’t “here.”
Well, he traveled, all right…we took him to Sheffield, Massachusetts, to the then-named Option Institute run by Barry and Samahira (“Susie”) Kaufmann.
I had read the book “Son Rise” by Barry Kaufmann; it detailed the journey Barry and Susie took with their hopelessly autistic son Raun. The journey ended in phenomenal success. Raun recovered completely and went on to later become the CEO of the Autism Treatment Center of America, also in Sheffield, Massachusetts. The method taught there is informally called the “Son-Rise Program.” (The original Option Institute morphed into a different direction as it was replaced by the ATCA.)
We figured if the method was good for autism, it was probably good for Down syndrome, because our little 18-month old now refused to learn anything, and would literally turn his back if I approached him with–say–alphabet blocks.
We spent an eye-opening week at what was then the Kaufmann’s Option Institute; while staff worked all day with Jonathan, his dad and I met with Susie Kaufmann and other staff, getting training ourselves. As a bonus, we met their son Raun during our week in Sheffield; he was 13 at the time, and had just returned from Summer Computer Camp. He was perfectly typical, except for an unusually high IQ.
Our take-away (among others) from that week with our son was: join him. When a child cannot come into our world, we can make contact by entering into his. Whatever Jonathan is doing, he’s doing for a reason. Go into his world, join him with full love and acceptance, and he will know it. Make inroads. Then teach.
The Hole in the Wall
Back home, I approached teaching Jonathan with an entirely different attitude of acceptance. Alone with him in our “teaching room”, I approached him with teaching toys. He turned away, found a hole in the natural brick wall, and did his stimming trick: sucking on his tongue, touching the hole repeatedly. I snuggled next to him, found my own little hole in the wall, and began the tongue-sucking routine.
He stopped instantly. “NO!” he said, looking at me, astonished.
“But I like it,” I said.
“NO!” he said again.
“I like my hole; you have yours, and I have mine,” I cheerfully insisted.
He didn’t like that answer one bit, abandoned his stimming, and turned to attend to what I wanted to teach him.
Just like that, it was over.
Any stimming that he did in days after lasted only seconds; he was easy to redirect into focusing on what I wanted to teach him. All the work that his dad and I did with him from that point on was from that loving, accepting viewpoint. (For more on the details of the Son-Rise Program, read Raun Kaufmann’s book “Autism Breakthrough,” and the original story in the book “Son Rise” by Barry Kaufmann.)
Note: Jonathan (now age 32) has 3 diagnoses, but autism is not one of them: he has DS, ADHD, and ODD (Oppositional Defiant Disorder.) Read “Son Rise” to see how Susie and Barry worked with their son. Typically with DS, there are many “crossover” symptoms shared with autism, which makes it necessary to have an accurate diagnosis done by a qualified resource.
Transfer that to reading…
I now see how valuable the “join him in his world” attitude is: thinking back on the 3 years I spent teaching my 5-year-old to read so quickly, I think the understanding behind what I’d learned with the Kaufmanns was part of the reason Jonathan was an independent reader by 8 years. Every bit of reading material I put in front of his eyes was material I had created on topics he dearly loved: his trains, his drums, his family…I knew what was close to his heart, and I went there to teach him to read.
This reading approach worked like magic. The old phrase “soaked it up like a sponge” is a perfect description of how he learned to read.
It’s an approach I use with my challenging reading students today, some of whom have the DS/ASD dual diagnosis. There is always a reason why they’re doing what they’re doing, no matter what it looks like. If you can enter their world, you can build bridges.
Cheering you on,
Whole Child Reading by Natalie Hale
Down Syndrome Parenting 101 by Natalie Hale
Son-Rise by Barry Kaufmann
Autism Breakthrough by Raun Kaufmann