Reading
After Bock’s book, I started to read again. I forgot how much I loved to read.
I searched online for books and articles, reading and
ordering as I went. I had read about
three or four when I remembered about another book. About two years ago, we were invited to a
neighbor’s house for a football party.
We brought Coleman, which was risky since he wasn’t very familiar with
this house and of course he wasn’t interested in football. He stayed in the kitchen watching his DVD,
and I stood at the threshold between the kitchen and the family room, loosely
watching the game beside him. My
neighbor’s father was there too. He was
a retired doctor, a smart Harvard grad, kind and soft spoken. He came out to the kitchen and asked about
Coleman. When I told him he was
autistic, he quietly nodded. He didn’t
say much, but he watched Coleman for a few minutes then went back in to watch
the game. The next day, my friend swung
by with a book. “My Dad wanted you to
have this. He thought you might find it
interesting.” The book was called The
Brain that Changes Itself by Norman Doidge.
I thanked her and after she left I read the back cover. It seemed a little out there, about
neuroscience and brain plasticity, and I wondered why her father thought I
would like it. I skimmed it but didn’t
read it. But now, as I started to learn
a little about the brain and autism, I thought about that book. I went to my room, took the book from the
bookshelf, dusted it off, and read it.
Holy Cow, that book was amazing.
Absolutely the most fascinating thing I have read in a long time. It was not based on autism specifically. Rather, the premise of the book was that the
brain can heal, that conditions once thought of as permanent can be changed,
that neuroplasticity (the brains ability to adapt to obstacles) is a very real
science. It provided story after story
of true events where the brain overcame even the most challenging obstacles. I finally understood why her Dad had given me
the book. It was his very gentlemanly
way of telling me “There is more you can do for Coleman. It’s not too late to help him.” I get that now.
The more I read, the more surprised I became about how much
people were actually doing to actively try and heal their children. Parents across the Globe were actively
managing their child’s autism treatment plan, from dietary changes to
nutritional supplements to detox.
Parents who refused to believe nothing could be done, parents who started
to wonder if food or environment played a role in their child’s condition, parents
who questioned the standard response of “It’s because he has Autism” when they
asked why their child had chronic constipation or fits of uncontrollable hitting
or a sudden need to touch every corner in sight. These parents laid the groundwork for the
rest of us.
I’ll say upfront that I understand too the knock on this
whole approach: that biomed doctors are
just taking your hard earned money and leading you on when there is no cure,
taking advantage of the single strand of hope that desperate parents will latch
on to. It’s possible I suppose. I’m sure there are some doctors like that out
there. But there are many, many great
doctors who are at the frontier of what will be the future treatment of
autism: Individualized care. Because it is the only approach that will
work. Some of these doctors fell into
this practice – they had success with one child, and word spread and soon
others were lining up the door. Some of
them chose this path because of their background in biochemistry, and their own
research that proved links not commonly discussed in the medical
community. And a great many more doctors
practice this approach because they too had a child with autism. They lived this life, and through their own
skill, knowledge and hard work discovered an approach that worked for their own
child. And now they choose to share that
learning with others.
There exist tons of blogs and websites authored by moms that
have already walked this path. They are
funny and honest and informative, and they offer a wonderful parent
perspective. There are national
organizations including TACA (Talk About
Curing Autism Now) and GENERATION RESCUE for parents that provide information,
resources and support for families dealing with autism. These sites also offer a great deal of
research and news. There also exist national
conferences you can attend where some of the most brilliant researchers in the
field of Autism will speak about cutting edge research and promising new
approaches for improved treatment. You
can often find videos of these speakers posted on the sites above, or on other
online conferences. By now, I’ve
listened to many doctors and scientists speak on specific biomed topics and
it’s absolutely intriguing. I never
liked science. But now, well, it’s the
most exciting part about all of this:
that the basis is so completely supported by science. It makes so much sense. The gut-brain connection, methylation
pathways, the role of vitamins and minerals in our body, cellular function and
what that really means and what it needs to work properly, the body’s ability to detox – all of it. It’s fascinating. I
can’t get enough of the information. My
nephew says I’ve gone rogue. Maybe I
have. But once you figure this all out,
you want like hell to share it, to help inform others. I wish
I had learned it all sooner.
So, on that note, I thought I would list out a few books –
and if you know someone who has a child with autism, you could suggest one of
them. Or, if you have an autistic child yourself,
maybe you could pick one up. I
understand that all parents reach this point at different times. I don’t think I would have been receptive to
this much earlier in Coleman’s diagnosis.
I wanted to believe he would heal on his own. I wanted to believe that it wouldn’t be that
bad. I wanted to believe we would all be fine.
Clearly, I acted in exactly that manner.
Maybe some parents (me included) need to get to the really difficult,
trying times before you can accept that it will not get better on its own. Maybe some parents need more time. But when you are ready, when you start to
wonder Am I doing enough? pick up one of
these books. It will change
everything.
I’m currently reading Autism: Pathways to Recovery by Dr. Amy Yasko. It’s very technical but I love it. I wish I had gone to medical school. J
For books I’ve already read, I’ll put here first the Bock
book which I have already discussed at length, as well as the book noted
above. Both are great reads. The next book I would recommend most is Unraveling the Mystery of Autism and Persuasive Development Disorder by Karyn Seroussi. This book was ahead of its time, written by a Mom who was one of the early learners about food sensitivities and how it can impactful it can be in Autism. Karyn consulted medical papers, researched via the internet, and networked with other parents, finally tracing the onset of her child’s autism to an immune system breakdown. It read like a diary and was short but super interesting. An excellent first read for a parent starting this journey.
Up next is Cure Your Child With Food by Kelly Dorfman. Another fascinating book – and not just for kids with autism. Kelly Dorfman is a nutritionist who does an excellent job connecting hidden links between nutrition and childhood ailments. It was here that we figured out Emma had a gluten sensitivity. Emma had been having severe headaches and stomach aches for nearly a year, back and forth to doctors, without any success. After I read this book, and learned a bit about Gluten Intolerance (vs. Celiac) we decided to trial a week without gluten. For the first time in more than a year, there were no headaches. She hasn’t gone back to gluten since, and she is infinitely better. And for Coleman, the book linked a possible milk intolerance for us. According to Dorfman, if your child is having difficulty growing, or has occasional blood in their stool, before even going for a bone scan, you should try eliminating milk (casein). Interesting since, for years, Coleman has had traces of blood in his stool. He is tiny for his age, not even on the growth charts, and at 11 ½ years old, and 60 lbs, he is just now moving up from his size 5-6 pants to a solid size 7. He has been to an endocrinologist several times for bone scans and growth assessments to try and determine why he isn’t growing, without any success. So you can imagine my surprise when I read about the milk sensitivity in this book. No one ever mentioned that before.
Another good book outlining symptoms and approaches is Healing
and Preventing Autism by Jenny McCarthy and Jerry Kartzinel, MD. You can say what you want about Jenny
McCarthy but she is doing a boatload to shine the light on this topic. And she lived it. Her son was nonverbal, stimming, and suffered
seizures. She fought hard to bring him
back, seeing top neurologist and drastically changing his diet and adding
supplements. Her son is now
recovered. She has made it her life
journey to help inform other parents that there is help, there is a way to
recover. And she’s doing a pretty damn
good job at it.
Relating to the Gut/Brain connection, and the old adage, you
are what you eat, check out Brain Maker by David Permutter, MD. You’ll start to think twice about what you
put into your body. Frankly, knowing
what I do now, and knowing what I have consumed in my life and what I have not,
it’s somewhat of a miracle that I am still living. J
Some others – in no particular order are:
Disconnected Kids, by Dr. Robert Melillo. Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride.
Children with Starving Brains by Jaquelyn McCandless, MD.
There are lots more, but this should be a good start!! Happy Reading!
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