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.”  

“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?          

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 regressing...it'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.          

A giveaway that was 2,000 people in the making!

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Can I just say how much I LOVE my Facebook fans?

I do. You rock.

I want to say thank you. For liking me. Somehow you guys found my Facebook page, read my blog, and yet still stick around to hang out.


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And since you are all cool like that, it's time to celebrate a momentous occasion. The Caffeinated Autism Mom Facebook page finally reached 2,000 Likes, and it has been a loooong time coming.

Thanks for showing up and letting me know that I am not alone in my often-caffeinated, autism-laced wanderings in life. It's nice to know that there are folks there who share in some of my misery, successes, confusion, brand of hilarity, mishaps, and let's face it...crazy.

My gift to you is a sweet kitchen towel and potholder set featuring the vintage coffee lady that resembles me to a certain degree.

If I can ever afford my own custom graphics for this little blog, I imagine I'll change the CAM images to look a bit more like her. After all, she's a wavy-haired brunette, just like me. Oh, and you gotta love how she rocks the pearls and the fancy cup!

Now, get on with it. Win the cool kitchen towel set already. And, don't forget that sharing is caring.

**Please Note: Some folks with Internet Explorer are not seeing the giveaway widget below. It works flawlessly in the Chrome browser, if you are having any trouble.**

You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.


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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.

One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.

At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.

I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.

Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.

Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.

Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.

This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.

I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.

It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.

I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

Cousin It and the Bride of Frankenstein are in the car!

In my last post I told you that our family is dealing with a tremendous amount of stress right now. Since then my mom has been in and out of the hospital...and is currently back in.

When it rains it pours. In our case, it feels like a hurricane.

I feel like a raw nerve at this point.

However, something happened this morning that gave me a moment of humorous relief, and I thought I would share it with you. I find it important to focus on the good stuff to get me through the bad stuff. So, here is my attempt to do that.

Monkey is in orchestra. Orchestra practice happens twice a week before school starts, and in the case of Monkey's school, that time is 0-dark-thirty (a.k.a. butt crack of dawn).

Up until recently, we have driven to his school under cover of darkness because we were always up before the sun. It pains me to even type that. I would rather have been in my warm and comfy bed any of those days...

Well, I realized this morning that spring has sprung, and we no longer drive in darkness.

It was a typical Pacific Northwest morning: overcast, gray and misty. So, I did what I always do when I am stumbling around, bleary-eyed in the morning. I attempted to make Monkey's lunch and get him to eat breakfast, wake up Prince Charming to get his coat and slippers on, and then we headed off to orchestra. I put the defrost and heater on high so that I could see something through the windows of the car, and we got our trip underway.

Now, for the visual:  I am wearing some God-awful sweat pants that look like they've been through a war and have shrunk through repeated washings, which makes them unfashionably highwater. I have on my husband's old flannel shirt that he didn't want anymore but I thought it was too comfy to toss out. My slippers are fuzzy, but well-worn in that matted down, filthy fleece kind of way. And, the best part - I am sporting the most awesome naturally curly, long-haired bed head you have ever seen. I haven't even bothered to run a comb through my hair or even brush my teeth. Makeup? Ha! I laugh in your general direction. I am the antithesis of "put together."

So, we are driving along through the fog and the gray and I start to get a glimmer of light coming through the windshield. Could that be the sun? As we get closer to Monkey's school, the sun gets brighter and the fog gets thinner. It's actually quite a beautiful morning and I am silently reflecting on that.

We pull up in front of the school and I park in the line of cars with other parents waiting to let their children off for orchestra. The sun is brightly streaming through my sun roof and that's when I looked at myself in the rear-view mirror.

BIG MISTAKE!

To describe my hair as "finger-in-a-light-socket, sideways-mohawk, Bride-of-Frankenstein frizzy" does not even begin to touch what I saw. There I was in all of my backlit-by-the-sun glory, exposed by the sunlight to all of the cars around me. Those poor parents and kids that saw me must likely still be in shock.



I wasn't even this cute - she has makeup on!
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I averted my eyes from my own freak show to glimpse at Prince Charming in the back seat.

He likes to bring a throw blanket with him in the car when we take Monkey to orchestra. This habit originally started out as a "I'm sleepy and cold" thing and ended up being a sensory thing. He would throw the blanket over his head, much like you would if you wanted to pretend to be a ghost. It helped him block out the bright car lights that we would see in the dark mornings, and he liked the feeling of a warm and soft enclosure. It was a sensory tool he figured out on his own, so I have supported him continuing to use it in the mornings that we make the early drive.

As I looked at Prince Charming, the only thing I could think of was that he looked like Cousin It. He was covered up by a fuzzy blanket and it struck me as funny.



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Apparently the sunshine made me a little loopy or something.

Here I was, the Bride of Frankenstein with my raggedy clothes and wild hair, and Prince Charming was a more colorful version of Cousin It.

I felt bad for Monkey having to asssociate himself with us in light of our early morning, roll out of bed version of crazy. Had he been a neurotypical junior high schooler, he would likely have asked me to park down the street so he could walk to school so that we didn't embarrass him. Thankfully, that is not an issue we have to deal with (yet).

I think maybe next time I take him to orchestra I should at least comb my hair. Darn that sunshine!