Monday, July 29, 2013

Did Daddy Have Cancer?

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.”  


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?          

Monday, July 8, 2013

The joy and anguish of flying a kite

After the school year ended we took a much-needed mini vacation, which ended up being a small family reunion. My mom had just been recently released from the hospital. My brother flew out from Colorado and my dad rented a beach house on the Oregon Coast for all of us. It was a nice time to gather together and just be a family for a few days.

Part of the trip we were dodging rain drops, and this was a picture I captured one evening as I enjoyed the view of the sunset over the ocean from our rental.

The boys had a huge fascination with the stairs, since our home is single level. They kept running up the stairs and sliding down them head first. They had tons of fun!

And then, there was the sleeping loft. It was a match made in little boy heaven. They got their own cool sleeping space that gave them an awesome view of what was going on downstairs.

And, when you have a really tall daddy like Titan, this is what happens when little boy feet are dangling through the railing...

I found my dad and Monkey hanging out in the sunshine one afternoon in the back yard.

And, after about 20 minutes of carefully negotiating our extremely sensory-sensitive Prince Charming into the water of the hot tub, I was able to capture this gem before I climbed into the water with the boys.

I love the Oregon coast. It is so picturesque.

And, now we get to the heart of our story.

In anticipation of our beach trip, I had purchased new Angry Birds kites for the boys. They had never had a very successful kite-flying experience before, so we were eager to test the new kites' ability to catch the wind.

After a quick tutorial with a short line, the boys practiced near us and ran around in circles. They had a lovely time. Titan then showed them that they could let the line out more and watch it fly higher. All they had to do was run to keep it in the air.

And that is when it went horribly wrong.

At first, I was enamored by the sheer joy on their faces. It was an astonishing moment of freedom for them. They were running with excitement and happiness. I didn't want the moment to end and was rapidly taking pictures of them to capture this milestone. I was able to watch their fun easily through the zoom lens of my camera.

I put the camera away for a moment to chat with Titan, and that's when it happened. We both realized exactly how far down the beach the boys had gone. And they continued to run, without stopping. They did not glance back once. Monkey was in the lead and Prince Charming was just trying to keep up with his brother.

Titan and I left my dad and brother behind as we scrambled down the beach as fast as we could through the sand. Each moment we traveled, the further and further away they got. After chasing them for what was likely ten minutes (that seemed like an eternity), the wind must have shifted, because Prince Charming managed to hear one of my bellows.

He stopped and looked back. Monkey was still running at full speed.

I used exaggerated body movements and sign language to tell Prince Charming that he needed to get his brother and come back to us. He seemed to understand, thank the Lord.

He ran off to catch up to his brother and started yelling his name. Monkey was far enough away he didn't hear him. Titan and I continued toward them, but knew that neither could hear us. After a few more minutes, Prince Charming managed to get close enough to Monkey to get his attention, and he finally looked back toward us.

Titan and I were wildly signaling with our hands to come back. He saw us. Both of the boys started heading back in our direction. Thank God. I never made it down the beach as far as Monkey did, and I swear to you it was probably at least a mile away from where we had begun. Looking back down toward our starting point, my dad and brother were barely distinguishable as dark specks on the sand.

When the boys made it back to us, we quickly reeled in the lines on their kites and had a stern chat with them. The long walk back was spent in silence. There were no smiles. No more joy.

It was a shame. They had no cares in the world as they ran along the beach, loving their kites, the wind, and the sun. What was a blissfully happy moment for the boys became something entirely different. Their freedom escalated into our intense worry over their safety, and our recognition that they lacked understanding of possible consequences.

After we re-joined the others and the boys settled into looking at rocks, I quietly excused myself. As I walked up the hill to the car, the tears began to fall behind my sunglasses. I stifled my sobs until I got into my car, and then I let it all out.

This was not the first time Monkey had wandered away with no regard for safety. One time he was brought back to us by the police after being missing for almost an hour with a full-fledged neighborhood search underway. It was a horrific experience I never wanted to repeat. Talk about a flashback.

It had been a few years since we had dealt with his complete disregard for safety concerns. Titan and I thought this portion of our autism experience was finally behind us. That hope was immediately crushed as I reflected on what had just happened with the kites and what could have been, had we not been able to get Prince Charming to hear us and understand that he needed to get his brother's attention. With Monkey's high level of endurance, rate of speed, and sheer distance he had on us, there is no telling where he could have ended up before he stopped.

I was snapped back into the reality of autism.

As I cried in the car, I wondered if any of it would ever actually be behind us. The rollercoaster of the boys doing well then not doing well, improving and's all so exhausting as so many things in so many areas of their lives can be affected.

It made me ponder the big picture. What will the future hold for my children? It can seem so uncertain from day to day. I always hope for the best, but you can't help but go through worst-case scenarios in your head. Will my planning 20 steps ahead for things ever stop? Will my boys ever lead a "normal" life? I guess I have less certainty of that than I thought I did.

A day that started with so much joy, ended with anguish.

As we checked out of our rental that morning and went down to the beach one last time to fly kites before we left town, I certainly didn't expect our vacation to end on that note. And, I doubt I will ever look at a kite in the same way again.          
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