Early in 2011, when I was still a hospice CNA, I decided I’d like to go back to school to become a nurse.
“Really?!” my partner, Lisa,
asked when I told her. “You want to do that?”
“I do,” I said.
I shouldn’t have been
surprised that she was surprised. First of all, I already had two degrees. But
also, after one of our twins suffered a brain bleed and subsequent brain damage
following open-heart surgery and both boys were diagnosed autistic, I had gone
on an off-trail adventure in regard to Western medicine. None of the medical professionals
had had much to offer, to tell the truth. Your
sons have autism—there’s no cure—good luck! was about the extent of it. And
then as we were walking out the door, completely devastated: You can try speech and occupational therapy,
but we’re not sure how much good they’ll do. Oh, and you might try ABA (applied behavioral analysis). Some people swear by that, but most insurance
policies won’t cover the thousands and thousands of dollars it will cost.
We arranged the speech and
occupational therapies right away, and we saw some improvements in the boys’ language,
behavior, and fine-motor abilities. We also arranged for them to get what ABA
we could afford, and that, too, has been incredibly helpful. But our life was
still completely unmanageable. At three and a half, the kids were not showing
any interest in potty-training, not talking, not making eye contact, not
responding to their names, eating dirt and paint flakes, fussing over the texture
of socks and pants and necklines, screaming in any store we visited, screaming
for hours in the middle of the night, screaming, screaming, screaming. We were
emotionally threadbare, physically exhausted, and financially drained.
We considered the DAN
protocol (Defeat Autism Now), which showed some promising results. But there
were only a couple of practitioners in Colorado at the time, and the one we
were pointed toward had an eons’-long waiting list and lived two hours away.
Besides, the expense would have been astronomical. I would have had to get
pregnant again and sell that child—that is, if he was healthy, and my track
record was not so hot.
A friend of mine suggested a
different method of healing, which combined energy work, diet, and lifestyle
change. I could see that this tack was going to take a lot of work, but my
friend’s child was much improved because of it, and the program seemed doable
and relatively affordable. A gluten-casein-free diet made sense to my partner—there
was some scientific basis for it—but she was adamantly opposed to the rest.
A reasonable point of view. I
mean, restricting your child from eating whole eggs, milk, soy, corn, gluten,
nuts, pork, citrus fruits, and a whole host of other items seemed extreme and
counter-intuitive. How would the children grow? How would their brains develop?
But I felt that we should
give it a try. We could always reverse course if we saw a problem. Double-blind
studies—while giving more solid scientific feedback on the usefulness of various
treatments—take many years to conduct. But children’s brains and bodies don’t
wait—they continue to grow and develop, so while you’re waiting for the most
effective treatment options, you are also losing time impacting that growth and
development. We didn’t want to do anything stupid or harmful, but we did want
to try to positively affect change. I said to Lisa, “We essentially have to
conduct our own experiments.”
So I tried the more extreme diet, and here’s what happened: Aidan’s eczema cleared; Luca made eye contact; both boys’ digestion improved, as did their physical growth; they both became happier; their concentration and cognition improved; they transitioned better; they began to relate better and so forth. As a result, we chose to remain strict on their oral intake and continued to see progress. When we cheated on the dietary protocol, we observed a reversal of progress or a return of various symptoms or behaviors, so we’d go back to our strict accounting.
I also made other changes.
For instance, I got rid of every industrial chemical in the house. This effort
was very difficult (who knew we had so many?!), and while I was doing it, I was
not absolutely sure that it would help, but it did. Luca’s asthma all but
disappeared, as did a certain wrist-flicking behavior. He was still kneeling
every time he entered his bathroom, though—that is until I removed all his
asthma medications from under the sink and stored them in a plastic lockdown
container in a far-removed area of the house. Poof! Bathroom genuflection gone.
Other changes included: buying
as many organic fruits and vegetables as possible and using only natural
fabrics, only outgassed plastic toys, no plastic food containers, and no
petroleum-based products. We switched cleaning products to fragrance-free Seventh
Generation, and we got rid of everything else with fragrance. We reduced the
number of electronics in our house (actually, Aidan helped us with this last goal
by single-handedly destroying several computers and blowing up our stainless
steel microwave). In essence, we became Amish. I expected that soon I would be
sewing their clothes out of linsey-woolsey and churning my own butter.
Heaven knows, I did enough
other weird things, like clearing almost all the spices out of our house. I
convinced Lisa to buy an outdoor grill, and whenever we wanted to make a spicy dish,
I’d cook it outdoors, even in the winter, or else Luca would suddenly become
asthmatic. (This was to be avoided, as asthma issues required medication that
then caused behavioral issues.) Poor Lisa is from New Orleans, and she loves
spices, so this did not go over well. I didn’t completely get this. I figured, Hey, but we can still use our indoor
plumbing!
I periodically put the boys in special clay baths and sea salt baths. I had to hide the Vanity Fair magazines from Aidan because the perfumed pages made his skin break out. Well, I had to hide the Vanity Fair from him anyway, because, brain damage aside, the boy has a knack for finding the picture of the most scantily clad woman and then leaving the magazine open to that page. I like the female form, but I have to say, I’m a bit startled to come upon a half-naked Scarlett Johanssen before my morning coffee.
Luca reacted badly for a long
time to any toys with magnets, so the refrigerator letters were relegated to
the garage. I performed regular energy work on the children; it was
time-consuming, and I felt as if I had an unpaid part-time job. I went to a
local Catholic church and brought home bottles of holy water that I’d give to
the kids to drink when they were fussy. My non-practicing Catholic partner was
not amused.
“Ew,” she said.
“It’s not out of the
finger-dipping containers,” I told her. “They have a special canister with a
spigot.”
“Oh, well, that makes me feel
so much better,” she said, rolling her eyes.
But goofy as all this sounds,
these changes helped—who knows exactly why. Even if it was just that in so
doing, we engulfed them in love and care, so be it. They responded. They’re
better. They still have autism, but they’re better.
I also considered alternative
healing modalities for the boys that I myself had found useful, such as
chiropractic work, shiatsu, and acupuncture. But neither child would ever have
tolerated these practices due to the cracking sounds or pressure or needles. I
did, however, find a cranial-sacral therapist, and she began working on the
children and me, to great effect.
Meanwhile, Lisa, who was not
seeing results from all of her own medical practitioners, started exploring
alternative medicine. She, too, tried chiropractic, acupuncture, and
cranial-sacral therapy as an adjunct to her regular medical care.
Then, one night when the boys
were about ten, she saw the movie The Horse
Boy. “You have to see it, Karen,” she told me. “I’m not taking everyone to
Mongolia, but maybe we should take the guys to a shaman.”
I couldn’t believe what a
great distance she’d traveled from those early days. “Okay,” I said.
She then looked at me as if
to say, Oh no, what have I gotten myself
into?
I saw the movie, which I
found very intriguing, and we looked for a shaman. Because we’re in Boulder—the
hippie capital of Colorado, where alternative therapies and other strangeness
abounds—this task did not pose a challenge. There are a few here. We set up an
appointment with a woman and her protégé, packed up the kids, and nervously
went to her house.
This particular traditional
healer has a special cottage she uses in back of her home. It’s small but very
comfortable, decorated with objects she finds useful and inspiring, and many,
many pillows. Luca immediately began stroking the reindeer hide that lay
covering a massage table. Aidan examined various rattles and drums.
I wouldn’t know exactly how
to describe what the shamans did, but it wasn’t as far out as you might think
(talk therapy meets percussion jam?). They talked with us about why we’d come,
then began singing and playing their drums. What’s funny is that we’d come with
the object of helping the boys, but the boys were absolutely fine. Aidan played
happily by himself throughout the entire session. Luca picked up an instrument
and joined the shamans.
Lisa and I, on the other
hand, both shut our eyes and became very relaxed. My head felt extremely heavy
after a while. Eventually, we both found a place to lie down on the floor with
the throw pillows. Luca and one of the shamans brushed us with various fragrant
plants while the drumming continued. At one point, each shaman kneeled beside
one of us, cupped their hands against a shoulder, and blew (a “soul retrieval,”
and I thought to myself when this was happening, Where had it been?). Then more drumming, and when they stopped and I opened my eyes, I
felt as if I had had a very sweet, relaxing pseudo-nap.
Driving home, we decided that
the session had been helpful. We felt refreshed, and we had a new and profound
respect for our children. In fact, we kept glancing at them—grinning happily in
the back seat—and wondering, Who are you?!
I’ve always been interested
in spiritual questions and spiritual quests, so for anyone who’s known me a
long time, my off-trail adventures from Western medicine are no great surprise
(I was accepted at Princeton Theological Seminary many years ago but did not
attend). But because of my children, I’ve also been thrust into the scientific
world, and I’ve been wrestling within these two very different spheres ever
since.
I should say that I still
believe in the scientific method. I still think a person should carefully,
thoughtfully research how to approach a symptom, an illness, a syndrome. But I’m
glad our family tried other avenues. None of us is as simple as a collection of
cells. Scientists still can’t really tell us what consciousness is or where
it’s located. There is a great deal we don’t understand. Maybe science will,
over time, be able to prove why what we did worked. Or maybe not.
My son Aidan had less than a
one percent chance of even surviving after his two rounds on ECMO
(extracorporeal membrane oxygenation)—so what does one do with that? Some might
call it a Miracle. A good friend’s father called it Love (he implied that Lisa
and my love saved the baby, but I have some doubts about that). The doctors, I
can tell you, were floored and didn’t know what to say or what to call it.
So, for the purposes of this
essay, I’ve picked a neutral word: Mystery. Maybe we can all hold on to that.
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