Last night we went on a family walk as the sun was setting. Near our house there is an area that was under development and was quickly abandoned as the housing market fell apart in recent years. There are sidewalks
and trees, and it is set back from the main road. It makes for a serene, enclosed
space that lends itself well to family time. We have had some excellent walks
there on the long summer nights, and it’s a great place for the kids to get
their energy out before bed.
Just before we left our house to take a walk, I had been watching
a documentary on Netflix called “Dying to Have Known” about cancer treatments
and whether or not the Gerson therapeutic approach can improve health and cure
cancer. It was interesting to me because of my husband’s experience with lymphoma back when our boys were very little.
As I expected, when the boys heard the TV, they came out to
check what I was watching in case they were missing something. They ended up
watching almost the entire last hour of the documentary with me. I have no idea
what piqued their interest, but I was glad to have their company. I figured, if
nothing else, it might give them reason to ask me questions. Unlike most neurotypical
kids, my boys don’t seem to ask a lot of questions, and I have to really make a
concerted effort to have these kinds of interactions with them.
So after the movie concluded, we left for our walk. As we got underway, I was recounting part of the
documentary to Titan, who missed most of the movie. I briefly spoke about
how the work of Dr.
Gerson* and Dr. Burzynski* are
not viewed favorably in the mainstream medical community, much like how “alternative”
autism treatments such as the GFCF diet are viewed with the same disdain, despite
a lot of evidence about their efficacy. (*The documentaries, “The Gerson
Miracle” and “Burzynski” can be instantly viewed on Netflix.)
I was reminding Titan about how his doctor got upset when he
lost weight by eating raw foods, taking supplements and juicing while he was undergoing chemotherapy. The doctor was concerned that his weight
loss would make him sicker from the chemo.
Monkey interrupted us and asked who
we were talking about.
“I’m talking about Daddy.”
“Oh. Wait… What? Why was the doctor upset with him? Was he
sick?”
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“Yes, Daddy was sick a long time ago. The doctor didn’t like
what we were doing to help Daddy’s body stay strong during his treatment. But,
Daddy’s better now, so everything is fine.”
“What was wrong with Daddy?”
“Well, he had cancer. He doesn’t have it anymore. He’s okay.”
I could see the wheels turning in his mind as he remembered
the movie we had just watched and all of its talk about cancer. I could see it
was troubling him and he started to walk slightly faster so that he could avoid
me seeing his face. He tries to cope with emotions by avoiding eye contact
because it gets very uncomfortable very quickly for him.
I’ve often heard people say that those with autism have dulled emotional responses, but from my experience I can tell you that
I believe that sometimes the surge of emotions can be overwhelming and they are
responding in those ways due to a feeling of chaos and lack of control. I think
people with autism may feel even more emotion than you or I, and they simply
can’t handle the way it makes them feel. Monkey will do whatever he can to
avoid emotion, but sometimes it can hit him very, very hard. So, I respected
the subtle nonverbal clues he was sending me about how the subject of his dad
having cancer was difficult to process.
“Did Daddy really have cancer? What kind of cancer was it?”
“Yes, he did. He had lymphoma.”
Titan jumped in and asked Monkey if he could remember the
scar on his body, and told him that the scar came from a surgery where they removed his
tumors. He also talked about the blue tattoo dots on his chest that were used
to align the radiation machine.
“How old was I when this happened?”
“Well, your brother was a baby…about 6 months old. You were
2 years older than that. You were really young, which is why you don’t remember
any of this. We haven’t really talked about it with you because it happened a
while ago. Daddy is fine now. So, please don’t worry.”
“Okay.”
His pace slowed back down a little bit as his emotions began
to calm. I figured the door was open, so maybe we should expand the
conversation.
“You know you can ask me a question about anything whenever
you want, right? Is there anything that you want to ask me about right now?
Maybe about Daddy, or autism, or something else?”
“Yes. Why am I allergic to wheat?”
I explained to him that his food allergies are something he
was born with, much like my allergies to pollen, and that the special diet is
helping his body and brain. I also told him that the allergies are part of his
autism and that when he is on the diet, his autism is better. This, obviously,
led to the next question…
“Will I have autism and food allergies for the rest of my life, or will they be cured?”
I told him that much like with cancer, some people can get
better and some do not, and that this can also apply to things like autism and
food allergies. Some people have to stay on a special diet for their whole
lives, and that we didn’t know yet if that was the case for him or for his
brother. We talked about how the diet has helped his body, his brain, and his
autism, and that he needed to stick with it for a while longer.
We talked for several more minutes and I tried to involve
Prince Charming as much as I could. I made sure to specifically ask him if he
had questions about his autism or anything else. He understands that he has
autism, but gets easily confused about the fact that autism is a condition that
affects his body and brain, and that it isn’t something more concrete like a local event
we have called Autism Day. So, I talked with him about how some kids have
autism and some don’t, and reminded him about how we like to visit and play with our friends that
have autism at some of the special events we go to.
I know that in time his understanding will expand. All I
need to do is keep talking with both the boys and encourage questions in those
distraction-free times, such as family walks in the evening.
How do you talk with your kids about autism?
