Reading group guide

The Horse Boy , a memoir of healing , rupert isaacson

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TheHorseBoy_TPtext.indd 356 1/8/10 11:57:57 AM A Year and a Half Later . . .

Rupert Isaacson updates the story of The Horse Boy

t’s December 2009 and Rowan is just about to turn eight Iyears old. In a rare Texas cold snap the temperature has plum- meted to freezing and the horses outside the window are hud- dled together in their blankets waiting for me to give them hay. In an hour I’ll collect Rowan from the New Trails Center, which has been up and running for about a year and a half now. Rowan does his academics there in the mornings, and in the afternoons the other families and children come in — some on the autism spectrum, some not — and ride, play together, do their therapies out in nature. We have three great therapy horses, Clue, Hope, and El Capitan. Money from this book goes to fund the program. Sadly, this being Texas, neither the gov- ernment nor insurance companies can subsidize us. With luck, that will change in the coming years, but for now we are still lagging behind. Much more happily, however, the dysfunctions that left Rowan during his time in Mongolia are, amazingly, a mem- ory. The incontinence, the tantrums, the isolation from his peers — these have never come back. And as per Ghoste’s instructions, we have continued to make a healing journey each summer. Last year we went to Namibia, in southern Africa, where I know the healers per- sonally. Because I am still banned from Botswana, Besa — Rowan’s namesake — came fi ve hundred miles in the back of

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG2RGG2 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 3 a truck by bad dirt roads, despite being more than eighty years old, to conduct the healings in neighboring Namibia. In con- junction with two local healers from the Ju’/hoansi clan, the healings lasted three days. Each night Rowan fell asleep in my arms while the healers danced, sang, prayed, laid hands on him. Hyenas cackled out in the thick bush beyond the fi relight and lions huffed way out in the further darkness. What came after that was — surprisingly — a mathematical aptitude that had not been there before. One month after we got back from Africa, Rowan started adding and subtracting fractions. By four months he was doing them in double columns. I can’t do that. I’m still shaking my head. This past summer we went to Australia for work and man- aged to connect with a shaman of the Yalanji tribe, up in the Daintree Rainforest of North Queensland. The healings — again three in all — were very short, perhaps fi fteen minutes each, with some laying on of hands and a small ceremony in which a certain bark was burned and its smoke passed around Rowan’s body. That was it — very simple, quiet, all conducted in a small shelter on the ancient forest’s margins. Yet while under the healer’s hands, Rowan kept giving these great sighs of bliss. After the third session, when the healer announced he was done, Rowan sat up and said, “I feel better in my head. I feel happy.” Then he ran off to play, returned after a few min- utes, gave the healer a quick hug, then ran off again to chase after the brush turkeys he’d spotted passing by the shelter while the healing was going on. Some days later, while we were on the road south to Bris- bane, Rowan woke up in the middle of the night, strangely alert and wanting to go outside and play even though it was only 3 a.m. In my sleepy state I heard Kristin trying to reason with him as he cried: “When will it be not the nighttime? When will it be the time to play? I want it to be the time to play!” “Well, Rowan” — I heard Kristin sigh and summon all her

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG3RGG3 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 4 Buddhist patience in the darkness (I was selfi shly glad that she was the one dealing with it, hoping I could drift back to sleep before it escalated into a full-blown whine) — “you can choose to suffer like this, or you can choose to think about everything that’s good. You’re having a lovely trip with Mommy and Daddy. You cuddled a koala today” — he had: cute over- load — “and today we’re going to go to another wildlife park. So if you think of those things instead of what you don’t like, you might suffer less. It won’t change what’s going on now, but if you think about nice things you might not suffer so much right now.” Why is she even bothering? I thought, still selfi shly pretending to be asleep. He won’t possibly understand that. “Does that make sense, Rowan?” she asked. A for effort, I thought cynically. “Yes,” he said quietly. But it sounded like the kind of yes he might say when he didn’t really understand but feels a “yes” might be expected of him. Then silence. Ah good, I thought. Now if I can just get back to sleep . . . Perhaps forty seconds later a small voice in the dark said, “That does make sense.” Kristin and I both sat up. “What? You said what?” Not long after that, while we were all in the car, Rowan passed me a box of fries from the backseat. “Oh thanks,” I said, opening it, surprised he was sharing his food with me. Inside was a toy sea anemone. I jumped. Rowan collapsed into peals of laughter. “Oh my God!” said Kristin. “That’s Theory of Mind!” The joys of having a psychology professor for a wife. In a nutshell, Theory of Mind is the ability to put yourself in another person’s shoes. It’s tied up with empathy, with know- ing that other people have other states of mind from your own that may be true or false. Typically kids get this between four

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG4RGG4 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 5 and fi ve years old. To play a prank like surprising me with a sea anemone in a box of French fries, you have to know that the person is expecting to see French fries in there and will be shocked to fi nd a sea anemone instead. We take it for granted, but it’s a major milestone to reach — a survival skill, the abil- ity to put yourself in another’s mind, to differentiate between true and false. “He’s got it,” said Kristin quietly, as Rowan giggled away in the backseat. “He’s fi nally got it.”

This coming year will be the last of the three journeys that Ghoste instructed us to take. We are in the planning stages as I write. Whether the outcome will be as he predicted, that Rowan’s autism will for all intents and purposes leave him after his ninth year, remains a mystery. But what of healthy skepticism, the voice of rationality? Allow me to play devil’s advocate for a moment here. It may come as a surprise to hear that I don’t think that shamanism cures autism. It doesn’t. Horses do not cure autism either. I’m not sure that anything cures autism. So in that case why under- take these healing journeys at all? Because I think there is a crucial difference between heal- ing and cure. For me, healing is the amelioration of negative symptoms to the point that a condition is no longer a disorder or a dysfunction. Cure implies the removal of the condition or way of being altogether. Rowan is still autistic, will always be autistic. But he is now so functional within his autism that increasingly it comes across as more of a quirky way of being than as a problem to be fi xed. Increasingly I now see autism as a skill set to be nurtured rather than a disorder to be fought. There are great gifts there: a quiet ego, almost like being around someone born enlightened. The ability to focus on the task at hand without worry about social

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG5RGG5 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 6 distractions (where do I fi t in the pecking order? am I tall enough / beautiful enough / rich enough / clever enough, etc.?). The incredible memory, the ability to be so completely in the moment, the rich intellect — for I have not yet met an autistic person whose intellect was in any way compromised, unless there was mental retardation or another similar attendant dis- order attached. All these are great, great gifts. In the cultures we’ve been lucky enough to visit since this strange journey began, one thing often stands out — that the healers themselves often exhibit neuropsychiatric symptoms; whether adult autism (like Besa, whom I have known for fi f- teen years but have never properly conversed with and who seldom looks you in the eye, and who mainly speaks in strange riddles), schizophrenia, epilepsy (remember Ghoste said he had “the mind of a child” until he was in adolescence and had epilepsy well into his adulthood), or some other related condi- tion. In Mongolia, the Kalahari, the Daintree Rainforest, these symptoms — or perhaps, in that worldview, these quali- ties — are regarded as a qualifi cation for a job (in this case, the vital job of healer or shaman), not as a disqualifi cation from society. As if these people had the necessary emotional and spiritual sensitivity to handle the complexities of moving between different states of consciousness. It’s a practical approach. Think about it: when you live 12,000 feet up a mountain in Siberia like Ghoste does, or in the Kalahari Desert, life is very hard. You don’t waste time on whim- sical notions if they don’t work. You can’t afford to waste human resources — if someone can do something, they do it. And you couldn’t institutionalize someone if you tried. So the society has to be fl exible, practical, and fi nd roles — very real roles. Is this a sick person, goes that line of reasoning, or is this a differ- ent kind of person, who will have a different role to play? As our own society fi nds itself confronting the autism pan- demic more and more, inevitably we will have to shift, fi nd

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG6RGG6 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 7 social and economic roles for our autistic population that make sense for us. There is much we have yet to learn. But back to Texas. Rowan is now two grades ahead aca- demically, with a huge circle of friends, and he now writes and tells stories. I’m hoping that the next fi lm and book will be a collaboration between him and me. Rowan’s autism is an inte- gral part of who he is. And I do think it is a gift. A gift I have no interest in him being cured of. But healing — the amelio- ration of suffering, the building on strengths — these things I will pursue on his behalf until the day I die. Healing is a very personal thing. Not everyone needs to get on a plane to Mongolia. But following a child’s interests, going with what motivates them, spending time in nature, and if possible working with animals — these things seem to help all children. It wasn’t my idea to take Rowan to Betsy — he took himself. Nor was it my idea to introduce him to shamans — it happened organically the fi rst time. There was a good result, so we just kept going. We never gave up on Western therapies either: we still do a fl exible kind of ABA alongside Rowan’s regular academic curriculum, and give him serotonin to help with his anxiety (hard to say if it’s working but we’re giving it a go). Some young adult autistic people I have met say they

remember being helped radically by vitamin B12 treatment. So we are considering that too. It’s not a question of taking some extreme either/or posi- tion between Western and non-Western medicine (after all, I’ve never met a shaman who eschewed Western medicine, and I even recently heard that hospitals in New Mexico are starting to allow Native American shamans into the wards because it seems to increase the recovery rates). It’s more about using every tool in the toolbox. And there is no consensus at this stage that medicine can help with autism at all. We are still very much in the infancy of our understanding of it all. We still have only questions — is this autism pandemic even true

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG7RGG7 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 8 autism, or is it some kind of mass reaction to increased toxicity resulting in autism-like symptoms? We don’t know. And for those of us on the front lines, until we do know more it’s a case of doing what seems to get results for a given child on a given day. That’s all we have to go on.

Rowan and I still ride Betsy several times a week — she still lives next door with Stafford — as well as riding Clue and Hope out at New Trails. Increasingly, Rowan rides by him- self, but sometimes we still get up in the saddle together. We also do academics on horseback — why not? Often the infor- mation seems to be better retained when taught that way. And the New Trails horses are now trained to do tricks on simple one-syllable commands; to bow, smile, wave a foreleg hello, lie down, sit down: we’ve found that for nonverbal kids, or kids who are just reluctant to use words, this kind of play can sometimes lead to speech, just as the regular riding can. We have also started running Horse Boy Camps here and in the U.K., where families camp out together in nature and take something of a journey on horseback each day. We’ve seen a few kids become much more verbal this way in the space of just a couple of days. We don’t know why. It just seems to work — not for all, but for enough that it seems worth a try. And if there is no change, well, it’s still a fun adventure. For Rowan, horses are now part of a much larger natural mosaic. He’s an equal-opportunity animal lover — to him bugs are as interesting as horses and elephants and different species of antelope. He can identify obscure types of Madagascan insect or primate and knows their taxonomy. Though I’m a nerd that way myself, Rowan’s knowledge of the natural world has now offi cially outstripped my own. There is an elephant sanctuary up in North Texas that has invited Rowan to come work with the elephants there. We’re excited by the possibilities.

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG8RGG8 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 9 So the adventure continues. And who, by the way, is to say that this autism thing cannot be the most wonderful adven- ture? That it cannot be something as beautiful as it is fascinat- ing? As wonderful as it is challenging?

So here is my prayer. For all of us who are involved with autism — whether it’s our children, our grandchildren, our nephews, our nieces, our siblings, the children of those close to us — I pray that this enigma we call autism will serve to bring us together, help us rediscover community, connect us closer to love. Inspire us and surprise us with unexpected joy. That it will help to heal us (for, yes, we neurotypical people need healing, too — at least I know I do). That it will bring out the best in our society, the best in us all. That’s my prayer. This coming summer we will make the fi nal healing jour- ney that Ghoste prescribed. It will happen closer to home — in North America and Europe. We will follow the spine of the Rockies from south to north, then go to northern Scandina- via, visiting different Native American healers, and the sha- mans of the Saami — the last indigenous group left in Western Europe — to fi nd out what healing exists right here, on our own doorstep. What will happen?

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG9RGG9 22/9/10/9/10 55:02:29:02:29 PMPM Questions and topics for discussion

1. When Rowan Isaacson was diagnosed with autism, his father felt an “irrational shame.” What do you make of Rupert’s shame? Have you ever felt similarly responsible for something beyond your control?

2. Rupert Isaacson worried that Rowan, Kristin, and he had become a special-needs family. What challenges do the Isaacsons face that do not affect families without a special- needs child? In what ways are they an “ordinary” family?

3. Rupert and Kristin received many confl icting diagnoses and recommendations from experts with regard to Row- an’s autism. What would you have done in their situation?

4. What do you think the connection was between Betsy and Rowan? Why do you think autistic children often demonstrate an affi nity for animals and nature?

5. Rupert and Kristin decided to take Rowan out of regular school and to seek an alternative. Do you think that public schools should accommodate children like Rowan, or are children with special needs better off in a separate setting designed specifi cally for them?

6. What do you think has contributed to the rise in autism diagnosis?

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG10RGG10 22/9/10/9/10 55:02:29:02:29 PMPM Reading Group Guide • 11 7. Rupert remarks that Rowan is “Like a normal kid. Almost.” In what ways is Rowan “normal” or not?

8. Rupert made a radical decision in taking his family to Mongolia. Was it a crazy idea? Was it sensible for the Isaac- sons? What is the most drastic thing you’d do for the sake of your family?

9. Rupert and Kristin’s marriage was tested not only by their son’s autism but also by Rupert’s insistence on going to Mongolia. Was he right to push her to go on the Mongolia trip? How does Rupert and Kristin’s relationship grow or change in the course of the journey?

10. The journey held many unpleasant surprises in store for the Isaacsons, among them being whipped by shamans and drinking fermented mare’s milk. They experienced emo- tional hardships as well. Which aspects of the journey would have been most diffi cult for you to undergo?

11. What did you make of the shamans and their ceremonies? Would you be willing to participate in such a ritual if you thought it might help your child?

12. Discuss Rowan’s burgeoning friendship with Tomoo. How might things have been different had there been no one close to Rowan’s age on the journey?

13. The author distinguishes between being cured and being healed. What is the difference between the two with respect to Rowan’s autism?

14. Can Western and traditional medicine systems coexist and complement each other? How about faith and science, when it comes to healing?

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG11RGG11 22/9/10/9/10 55:02:30:02:30 PMPM Reading Group Guide • 12 15. Late in the trip, Rupert took his family to Hustai National Park, where the original wild horses of Mongolia still graze. A stranger there scolded Rupert for letting his son run around and yell, and even after learning that Rowan is autistic the man maintained that Rowan shouldn’t be allowed to run around. Do you sympathize at all with this man’s point of view? What will the challenges be for Rowan as he grows up?

16. After the journey, Rowan seemed to be a changed boy. Discuss some of the ways in which he has been healed. To your mind, was there a specifi c moment when Rowan was healed, or was it a combination of infl uences and experi- ences?

17. In what ways might autism be considered a gift?

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG12RGG12 22/9/10/9/10 55:02:30:02:30 PMPM Resources and further reading

Below are several resources and Web sites where you can fi nd further information about autism, equine therapy, and indig- enous land rights.

American Hippotherapy Association www.americanhippotherapyassociation.org

American Hippotherapy Association, Inc. (AHA Inc.), pro- motes the use of the movement of the horse as a treatment strategy in physical, occupational, and speech-language ther- apy sessions for people living with disabilities. Hippotherapy has been shown to improve muscle tone, balance, posture, coordination, and motor development as well as emotional well-being. AHA Inc. consists of medical professionals (physi- cal, occupational, and speech-language therapists) and others who are interested in the use of equine movement as a treat- ment strategy.

Autism Speaks www.autismspeaks.org

Since Autism Speaks was founded in 2005, it has grown into the nation’s largest autism science and advocacy organization, dedicated to increasing awareness of autism spectrum disor- ders; funding research into the causes, prevention, treatments,

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG13RGG13 22/9/10/9/10 55:02:30:02:30 PMPM Reading Group Guide • 14 and potential cures for autism; and advocating for the needs of individuals with autism and their families.

Autism Society of America www.autism-society.org

The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism through increasing public awareness about the day-to- day issues faced by people on the spectrum; advocating for appropriate services for individuals across the lifespan; and providing the latest information regarding treatment, educa- tion, research, and advocacy.

The Horse Boy Foundation www.horseboyfoundation.org

The Horse Boy Foundation helps children on the spectrum and neurotypical children come together through horses, other animals, and nature. Proceeds from this book help to run the New Trails Center, near Austin, Texas, where daily equine therapy happens (and where Rowan attends school). The Horse Boy Foundation also runs Horse Boy Camps — several-day immersions in nature with horses for the whole family — in the U.S., the U.K., Europe, and Australia.

Indigenous Land Rights Fund www.landrightsfund.org

The Indigenous Land Rights Fund was established in 2004. ILRF recognized early on that a comprehensive strategy for conducting indigenous land claim campaigns was needed. The strategy ILRF developed intertwines numerous partnerships and programs that contribute to the positive resolution of

TTheHorseBoy_TPtextF1.inddheHorseBoy_TPtextF1.indd RGG14RGG14 22/9/10/9/10 55:02:30:02:30 PMPM Reading Group Guide • 15 indigenous communities’ land confl icts. Both domestic and international partnerships facilitate activities essential to pro- gram implementation, such as searching for funding; sponsor- ing awareness-raising events; outreach to the media; securing legal teams, legal consultation, and pro bono litigation and mediation work.

Nomadicare www.nomadicare.org

Nomadicare supports the sustainability and cultural survival of nomadic peoples in Mongolia, harmonizes traditional and mod- ern medicine, supports education, and documents nomadic ways and heart songs for future generations.

The Totem Peoples Preservation Project www.totempeople.hypermart.net

The Totem Peoples Preservation Project, founded in 1999, is a special project of Cultural Survival, Inc., dedicated to the rights, voices, and visions of native peoples worldwide.

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