Richard back again, with more good news. Emma continues to amaze and delight us with her nearly continuous playfulness, mischievousness and affection. Ariane and I have also been spending a lot of time visiting the blogs of autists and aspies, which have opened up a whole new world for us — and caused a dramatic shift in our perspective on autism and our goals for Emma. I’m a big believer in synchronicity and lately it feels like we are being bombarded with ‘coincidental’ occurrences that have had the accumulative effect of completely altering the way we’ve always looked at our journey together (I only say ‘we’ instead of keeping it to myself because Ariane and I have been talking about this about twenty times a day and we have been on the same page with most everything we’ve discussed).
For those who don’t know me well, I write fiction. My first novel is a supernatural thriller called The Book of Paul, which will be published soon. It is very dark and creepy, with graphic sex and violence — in other words, definitely not for kids. So quite some time ago I began writing a book I could read to Nic and Emma (or they could read to me) — a young adult fantasy called The Dream Palace. In many ways, it was and is my attempt to process my feelings about Emma’s autism and my hopes for her recovery – in other words, it began as a fantasy version of this blog. However, my perspective on what constitutes Emma’s “recovery” has altered in ways I never could have imagined only a few weeks ago.
Let me try and connect some of the synchronistic dots: we met BL in Aspen while on vacation who also has an autistic child. She introduces us to Dr. Sandy Lowe who has a very different theory on the cause of autism. He believes that a genetic vulnerability coupled with a viral infection of the mother during pregnancy, probably also combined with an environmental toxic insult causes a biochemical reaction that alters the natural neurological development of the fetus (something to do with cytokines but I don’t want to get lost down that rabbit hole). Sandy recommends stem cell treatments which we try without any dramatic results, but when discussing one of Emma’s post-treatment brain scans, he tells us about Dr. Marion Blank who is working miracles with autistic kids with her new learning program. Lo and behold, her program begins working miracles with Emma!
In my ‘spare time’ I also happen to have run a program for K-12 schoolchildren, encouraging healthy eating, exercise, literacy and other good works via positive messaging on the side of milk cartons — as in billions of milk cartons to tens of thousands of schools across the country — a very powerful influencer. So I decide to commit all these resources to an anti-bullying effort because we have had many issues with bullying at Nic’s school — and lobbied with only partial success for a more aggressive curriculum to address those problems. Needless to say, with our steadfast goal of getting Emma into a mainstream school environment, we worried about how much she might be bullied because of her differences.
In looking for established anti-bullying programs to partner with, I run across the Kind Campaign. It was founded by two exceptional young women, Lauren Persekian and Molly Stroud who were both traumatized by girl-on-girl bullying in school. They have produced an amazing documentary called Finding Kind where they toured the country, compiling a heart-breaking collection of stories from high school girls whose lives have been devastated by bullying. By the time Ariane and I finished watching this award-winning film, our previously entrenched goal of getting Emma mainstreamed has flown out the window! No way do we want Emma exposed to this vicious, cruel and traumatic behavior! While we’ve had issues in the past with her school, one fact is undeniable — she is loved to death by everyone in that school, teachers and students alike.
Our sudden abandonment of the mainstream goal had the most unexpected side benefit — our overall stress level plunged like a bowling ball from the Empire State Building! We had no idea how much of our day-to-day anxiety was rooted in our conviction that we absolutely, positively had to get Emma into a ‘real’ school right now! Voila! Our ‘happy index’ leaps from a 2 to a 9 overnight!
Next, my truly amazing wife, partner and life-saver Ariane, in her relentless pursuit of knowledge — not just to benefit Emma, but to enlighten herself about what life is like for adult autistics, begins visiting all these blogs which she then introduces me to and also blow me away. I’m hoping Ariane continues to provide links to all these wonderful sites since this post is already approaching my typical epic length, but I’ll just say that it completely alters my perspective on ‘curing’ Emma.
I’ve never felt that Emma had to be ‘normal’ for us to have succeeded as parents, but I’d be lying if I said I didn’t hold out hope that someday she’d ‘lose the diagnosis.’ Now, much to my relief — and Emma’s too I’m sure, I couldn’t care less about her obtaining a ‘complete recovery.’ She doesn’t need one! We want her to be able to function in our crazy world well enough to live independently and happily, but her quirkiness is a-okay. The strange thing is, I’ve always been an oddball, OCD type and so are all my favorite people –artists, visionaries, scientists, geeks and obsessive weirdos of very stripe. To be off the mainstream kick is like getting back to my own roots.
The synchro-fun continues with Ariane’s discovery of Henry Markram’s Intense World Theory for Autism — which oddly enough is almost identical to Sandy Lowe’s in regards to the cause of autism — and goes further to postulate that all autistics are savants of one type or another — and autism itself may be the next leap in human brain evolution, though apparently it’s still working out the kinks. Which brings me back to The Dream Palace.
One morning a long time ago I remember going into Emma’s bedroom and as she woke up, she said something to me in a long and completely articulated sentence. I was shocked to say the least. I remember telling Ariane about it but I’m not sure I could remember what Emma said by the time I told her. In fact, I no longer know for certain whether or not it really happened! Had I been dreaming? To this day, I can’t tell for sure. Given how strange it would have been for Emma to talk like that when she could barely speak at all, it seems obvious that it had to be a dream. But then again…
Regardless of whether it was ‘real’ or not, that incident became the inspiration for The Dream Palace, where Emma’s character named Daisy in the book, is able to talk perfectly in the dream world.
I’m a research nut. I enjoy the research process as much as the writing. Unfortunately, I could only find one research study of dream patterns and content in autists and it pretty much sucks. So of course, I wrote my own survey! I’m trying to get it out to autists who are willing to participate so if any readers have suggestions on how I could do that most efficiently please let me know. In the meantime, I’m rewriting the story because after reading Markram’s findings, I’m now convinced like he is, that not only does Emma sense, feel, and perceive much more intensely than us highfalutin ‘normals’ — she may indeed be much farther advanced than we are — which hopefully we will discover as her communications continues to advance so rapidly.
Bottom line? Life is good, very good. All it took was a complete shift in our perspective.
For more on our journey through Emma’s childhood of autism, go to: Emma’s Hope Book
In many people the inner self is hiding. While we try to uncover it, too often we ask people we don’t know “what do you do?” as though their profession will tell us everything we need to know, or “where are you from?” as though their original location will fix them, not only geographically, but culturally as well, or “where did you go to school?” And now we’re trying to figure out whether they are educationally up to where we think they ought to be if we want to converse with them. The one question we don’t usually ask is “How much are you worth?” because we suspect that this would be rude…
But with an autist it would never occur to ask any of these questions, and if she/he is someone in our own family, then the best we can do is to honor the beauty in our beloved. And perhaps this is the best way to uncover, not recover, the beauty that is the inner self?
Someday we may all be surprised by the joy that we find within the unknown.
Speaking about synchronicity… I follow regularly Ariane’s blog, I find it very interesting and instructive. My son was born on the same day as Emma, January 17, 2002 and he is autistic too. He struggles with words, but recently he expressed something interesting about his dreams. Namely, he told me that he would like to still my dreams, as he doesn’t like his own dreams. He couldn’t explain what exactly he does not like about his dreams, but somehow he thinks that my dreams are better. I tried to talk to his doctor, but she dismissed that as not very important. On a contrary, I find it reassuring that he at least can make a distinction between dreams and reality, something I wasn’t sure about until recently.
Maja — thanks for writing. Sorry to hear your son is having bad dreams but it’s great that he can communicate that to you. Emma has never spoken about her dreams until recently when I asked her what she dreams about and she said, “The sun.” Surprised to hear that I asked if she dreamt of anything else. “Darkness,” she said. I have no idea what to make of that but it’s certainly interesting!
Maja – So good to hear from you and it’s always nice to hear that others like reading the blog. I was struck by how your son told you he wanted to “steal” your dreams. It’s such a poetic way of speaking. Really beautiful.
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