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Foreword by Eustacia Cutler

In Chapter 11 of this splendid new family guide to autism, Dr. Raun Melmed and Maria Wheeler allude to the much loved story of the plane that was meant to take us to Italy, but instead lands us in Holland.

For most of us, Holland is not where the plane lands. Holland is an easy country filled with friendly people who respond sensibly to newcomers.

No, the plane we’re on takes us spiraling down the Alice in Wonderland Rabbit Hole into an unpredictable world alive with noisy behavior that demands our total attention, only to change as fast as we’ve figured it out.

Where have we landed and who is this small screaming creature who shudders at our slightest touch and won’t look at us?

Up until now, we thought all babies liked us and wanted to be with us. We used to say, “A baby needs a mother to know she’s a baby and a mother needs a baby to know she’s a mother.” Not anymore!

Okay, then what about Dad? Dad likes to fix things, but his baby’s behavior can’t be “fixed” not in the old familiar father-to-son way. When a man can’t handle his own son, what kind of a man is he?

“Few conditions are as puzzling and mysterious as autism,” Melmed and Wheeler write.

Indeed yes, welcome to the Rabbit Hole World where autism scrambles all our old notions about raising children.

Autism takes over and almost at once it’s hard for parents to hang onto who it is we thought we were. Along with the daily tasks of caretaking, which can be formidable, our individual sense of self gets shaky. And with it, how we think we’re perceived by others.

At this point, we also find we’re struggling to hang onto old customs and shared neighborhood values in a rapidly evolving culture that puts a higher value on personal identity and individual achievement.

In truth, the old customs and values are pretty much outmoded for everyone. And in their places, we have an Internet gadget that lures us into a virtual world of instant answers. All it takes is a finger sweeping gesture on the shiny face of a new cell phone.

Going to Australia? Dr. Google tells us what shots to get. Took the wrong turn to Minneola? GPS straightens us out. Need a new life partner? Virtual dating sites have the perfect mate.

Welcome to the world of easy answers — only there are no easy answers for autism. But if you are looking for a moment of much needed peace of mind, here’s a wireless head phone. Wear it and you’re isolated — dancing alone to disc jockey music only you can hear.

In this shifting, fragmented confusion where everyone and everything is up for grabs, how are Autism Spectrum Disorders (ASD) parents to manage?

First lesson of Rabbit Hole World is nobody can raise an autism spectrum child alone. Each family needs step-by-step professional guidance. And each family also needs an extended family to circle the wagons around them.

Sounds good, but how do we know “professional guidance” isn’t just one more Google answer? And who will help us assemble an extended family?

Now‘s the moment to turn to the book written by Raun Melmed, a pediatrician who understands and specializes in guiding families through the Rabbit Hole maze of neurological challenge, lost identity, and social screw-up.

Along with extensive pediatric know-how and some 30 years of hands-on practice here in the states, Dr. Melmed offers advice grounded in his own upbringing in South Africa, a beautiful country, scarred by generations of apartheid “separateness.”

In the years when Cape Town was suffering under apartheid, Raun, the child must have grown to manhood secure in the protective warmth of an extended family. This carefully thought-out guide book conjures up the old phrase “kith and kin.” “Kith” is a forgotten word for friends and neighbors, coined when fathers and sons, cousins and in-laws lived and worked together in close relationships on farms, in stores, and at institutions of learning. Kith and kin must have been crucial to Melmed’s boyhood, not just for extended family comfort, but for safety as well.

In his own words:

“Growing up in South Africa made me acutely aware of the differences among people during a time when apartheid attempted to divide them from one another. I resolved to work toward celebrating those differences and focusing on those with developmental challenges.”

To this declaration, Dr. Melmed adds a colorful sidebar:

“It I weren’t a doctor, I would be an actor. The unfolding human drama parading through my office on a day-to-day basis is what nourishes me — being privy to the joys and tears of the families and their children. So if not in real life, I would choose the stage.”

Dr. Melmed’s words sent me searching for those of Athol Fugard, renowned actor/playwright who also grew up in Cape Town.

“In the theatre, of course,” writes Fugard, “my fascination lies with the ‘living moment’ — the actual, the real, the immediate, there before my eyes, even it if shares in the transient fate of all living moments. I suppose the theatre uses more of the actual substance of life than any other art ... flesh and blood, sweat, the human voice, real pain, real times.”

Despite two lives based on different professions, both men know firsthand what it’s like to suffer one another man’s contempt, if not savage hate.

They also share a deeply felt drive to remedy and refocus the damage that acts of deliberate isolation — whether oppression in South Africa, bullying in an American school yard, or subtle shunning by neighbors — do to both victim and perpetrator.

In Autism and the Extended Family, Dr. Melmed and Maria Wheeler lay out guiding steps for a family’s possible transformation. “When we can do that and accept that loved one who is ours, we will be healed.”

The word “heal” means “whole.” No longer fragmented.

No longer dancing in lonely isolation.

Autism and the Extended Family

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