I’m mostly happy with where we are at with Coleman. He is really happy these days, and I’m so
grateful for that. But it’s more than
that. For so many years, we were trying
to change things, trying to make things better for him. Change Coleman’s behavior. Change Coleman’s tics. Change Coleman’s learning. Change Coleman’s medicines. Change Coleman’s supplements. Change Coleman’s autism. It’s a heavy burden to be striving for
change all the time, especially when the change you seek is not to be
found. It’s a relief, honestly, to be
where we are today; to accept what is
and believe everything is as it should be.
Life is much easier when we can just let things be.
But from time to time I second guess myself. Like when I come across articles as I did
tonight. “Autism-like Social Deficits
Reversed by Epigenetic Drug”. I stop
scrolling on my laptop and stare. A part
of my brain wills me to go past it, to not read it. But I have already clicked the link and am
reading the article. The content is well
above my pay grade:
“A chromatin-loosening drug already
approved as a cancer therapeutic may have another application—reversing the
social deficits associated with autism spectrum disorder (ASD). If chromatin is
packed too tightly, it can entomb genes, preventing their expression by closing
them off from the cell's transcriptional machinery…. According to these scientists, brief
treatment with a very low dose … restored social deficits in animal models of
autism in a sustained fashion.”
I understand just enough to be dangerous. Epigenetics is science focused on the expression
of genes, and the ability to turn on or off genes rather than altering the DNA
itself. Several years ago I read a book
by a physicist – her granddaughter was diagnosed with autism and she left her
job to focus on evaluating and fixing his genes through epigenetics. The story of course, is that she
succeeded. But more importantly, for years
after that, she treated and helped hundreds of kids on the spectrum achieve
similar results. By the time I found
her, she was no longer treating patients, but her prior years-long waitlist of
parents desperate for help drove her to publish many free guides on epigenetics
and how to test genes, how to interpret results and ways to alter various
gene’s expressions. It was challenging
reading for me, but I felt sure that somewhere in it all was the cure I
desperately wanted but could not find.
I think about that book again tonight after I read the
article. It’s been a few years since I
read the book. I rifle through my bookshelf unsuccessfully to see if I can find
it. I consider for a minute looking the
author up again. Maybe I can plead with
her to just look at Coleman’s data. Maybe she can help.
I glance at Coleman from where I’m sitting. He’s laughing out loud, watching The Bubble
guppies on his computer. I smile at him
and he smiles his beautiful smile back at me.
I walk over to him, pull him close and whisper to him. “You know I would do anything for you, right
Buddy?” But he pushes me away like a typical teenager and points to his
computer. The characters are pretending
they are race car drivers, and he and I repeat portions of the show back and
forth, as if we too are race car drivers. He skips around the playroom
happily.
I go back to my laptop and stare at the article again. After a few minutes, I close the article and
close the computer.
It's really hard sometimes to just let things be. And not because Coleman isn’t just awesome as
he is. He is awesome. Really awesome. But sometimes letting things be feels a lot
like giving up. And I never want Coleman
to think I gave up. Especially since I
never even found what we were searching for. I wish so much that I could have found the secret
that would have changed everything for my boy.
But here we are. I am
desperate for a forgiveness from Coleman that I know I can never get. A forgiveness for trying and failing so many
times. A forgiveness for being unable to
change his story. Lord it is a heavy. But I am working on myself. Working on knowing that giving up on change is not the same as giving up on Coleman. Working on self forgiveness. Working on extending us both the grace to accept each other as we are – with
both strengths and weaknesses but above all with love. Loads and loads of love. That’s something we both can just let
be.
