No more secrets

So today I had a talk with Max that I wasn't planning to have. I always knew that we would eventually tell Max about his autism, but I didn't know exactly when it would happen or how we would explain it. I figured when the time felt right, we would do it.

This morning, we had another discussion about too much computer. And again, I got upset with Max about the obsessiveness that comes with it. All the kids are a bit obsessive, but Max really, really struggles with it. The other kids are ok with me putting limits to the computer but Max has a hard time with it. It's an addiction, just like every other routine of his is an addiction. It's not a simple fix of "just turn the computer off." That would be as simple as telling an alcoholic to just throw away the bottle or tell a chain smoker to just throw away the cigarettes. It isn't that simple and it's not that easy.  It turns their world upside down.

So I got upset, talked about how we are going to (again) cut down computer time and so on. And as I was talking, Max curled up in a ball. To him, it's like I'm taking a piece of his life away. Dramatic, I know. But a routine is a routine, a way of coping with his life. The computer has become his escape and now I'm tearing that escape away from him.

Later, after I calmed down, I decided to talk to Max about school and what to expect. I grabbed a notebook and pen and told Max I needed to talk to him. But as I sat down, my thoughts on what I was going to talk to him about suddenly changed--from school to autism. "Tell him about autism" was the thought in my head, something I was not planning on doing this morning or as far as I knew, any time soon.

I wrote down "Autism", with my hand shaking a little and my heart thumping. I asked Max if he knew what the word was. He didn't.

I said, "It says autism," and then found my throat closing up with unexpected emotion.

"Autism." Max repeated back in a very soft voice.

There was a moment of revealing for me; kind of like a moment when you see your kid in their hat and gown for graduation, or when you see your daughter in her wedding gown on her wedding day. It's like a revelation--you knew this day was coming and you tried to prepare for it, and it's bitter-sweet to see it come and a new page in your life is turned.

I remember the day I said "autism" to myself. I would lay awake at night, thinking "autism". I would make the supper, thinking "autism". I would watch Max play at the park thinking "autism." I didn't want it to own my child. I didn't want it to consume him. Autism has been a daily fight for me.

Part of the reason why I've put off telling Max about autism was because I didn't know how to tell him in a way that didn't make it sound like a disability. I didn't want him to think that now he had an excuse not to try. I didn't want him to use it as a crutch. But it's autism. It is a disability. He does struggle with autism. It's not his fault. So I've put it off, both Dennis and I, because we didn't know what words to say.

Thankfully the Holy Spirit gave me the words. I don't think I can even repeat back to you what I said, except maybe a small portion. It all just came flowing out, and it all came out perfectly. It was not at all what I had rehearsed in my head. I was not crying, like I was afraid I would, and Max did not seem to view his autism as an excuse not to try.

Naturally, his next question was: "What's autism?"

I wrote down autism again on one side of the paper and I said, "you know how there are some things that you struggle with? Like too much computer? Or getting too excited? Or not wanting to make friends?" I began to write some of the things down that Max struggles with in his autism with his help. I said to him, "All of that you struggle with--is autism."

Then I wrote on the other side of the paper: "Max".
I asked him, "What makes Max, Max? What makes you, you?"

We wrote down words like "gentle", "caring",  "loves God", "tries hard". Max added in "wants to be a saint" and "is good with Henry". We also added "Max does want friends".  I drew a line down to separate the two and said, "This is Max. That's autism. Max is not autism. Notice how much longer the list is for the "Max side" and the list is shorter with the autism side? Max is stronger than autism. God gave Max the gifts to overcome autism."

I told him that autism is his special gift from God. He has to try harder, work harder than most people will. The man that works hardest in his job is always paid the highest; the solider who overcomes his fears is the bravest; and it's the same with God; the soul that works with his cross attains heaven.


I said to him, "You know how sometimes I get mad at you for being obsessive about the computer, or sometimes I get mad that you have too many routines? Well, I'm not mad at you. I'm mad at autism. Because I don't want to see autism holding you back anymore. The 'Mama Bear' comes out when I see autism controlling Max. I want you, Max, to start to control autism and be all that God wants you to be. Don't let autism define Max. You can beat autism if you want to." (Matthew Laborteaux, who played "Albert" on Little House on the Prairie, had autism and overcame it.)

At the end of the talk, Max was just fine. He learned something new about himself and he didn't seem affected one way or another. He just now has a name for some of things he struggles with: autism.

As for me, there are no more secrets. I no longer have to be afraid of saying "autism" in front of Max, and I know longer have to whisper or mouth "autism" in front of Max when talking to a therapist.

Max needed to learn about his autism so that he won't blame himself anymore. I began to see a depression starting when we would get on his case about trying to control what was out of his control. I would hear his prayers that God would help him "be good and not so hyper" or "help me not want the computer so much." I want him to take responsibility to fight what he needs to fight, but not take responsibility for something that is not his fault. It is what it is, and it's simply autism, the cross that God wants him to have.

And I don't mean to say that a cross should be "fought"; but it needs to be carried. He will always struggle with autism. But there are many success stories out there of children who have learned to overcome it by simply working with it. But you can't overcome something when you don't know about it, and you can't work with something, if you don't know what that something is.

As for Max, autism doesn't define him; he's his own person. And autism stays on the side lines, where it should be.