He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Saturday, June 11, 2011

He got his eyes from his Father. But who did the Autism come from?

Like all parents of a child on the autism spectrum, I continually struggle with the question of why he has it.

I had just gotten over the fear that I caused James' autism by "not nurturing him enough" when I showed him off to a friend of a friend at a party, who said "I just heard on NPR that autism is caused by letting your child watch too much TV".  I was so horrified I didn't know how to respond, I was completely floored that someone could even consider that plausible, and then say it out loud - AND SAY IT TO ME!

I have a very strong belief about what happened.  It has always been based solely on instinct, but there was an article this week suggesting that others have the same theory.  And although I'm nervous that people close to me are going to be upset, I need to talk about it.

I believe that toxins I was exposed to while growing up were passed on to my son, and these factored enormously into his having autism.  My toxins.  Not Tony's.

Salem, MA, soccer fields built on a dump were recently closed because dangerous levels of lead and cadmium were found in the soil.
I grew up playing soccer almost every day. 
I was lucky enough to live in a town with beautifully manicured soccer fields, and I spent as much time as possible on them.  I never thought about how the fields managed to stay perfectly green and lush at all times (while located within the town dump).
Chem lawn visited my yard regularly.  When we wanted to play in the backyard, we simply waited until the white spots dried up, and then we moved the little danger sign out of the way.  I didn't think anything of it until my dog got tumors on his rear end and back legs.

We regularly ate tuna fish (still one of my all time favorites) and vegetables (still not a fan) out of cans.

We didn't know any better. I'm not to blame, nor are my parents or community, but I believe that these and other toxins (maybe pesticides on that plant I did some, um, research on while in college) factored in to James' autism.

The article suggests a possible link between toxins that mothers were previously exposed to and autism (link to full article below):
"Studies have strongly suggested a genetic component in the cause of autism, but it's becoming clear that genetics alone isn't the whole story; there could be interactions between susceptibility genes and environmental chemicals."
My family is participating in a genetic research study at Children's Hospital Boston, and our DNA will be tested and compared.  It will be interesting to see what the research shows, but my instinct is telling me that my DNA is going to share something with James that his father's doesn't.  A "susceptibility gene" perhaps. 

It's just a hunch, and I don't have a study group like that fabulous TV watching research, but I do have the benefit of 8 years of around-the-clock observation, mental notes and self-reflection, as well as the vivid picture of the Chem Lawn sign ingrained in my head.

And now there are some in the scientific community suggesting a similar cause.

Here are the links to both articles:


Thursday, June 9, 2011

Dunkin' Go Nuts (or how to react when your ASD child plays typically)

James tried to drown his friend the other day, and I cheered.

OK, that is a bit of an overstatement. James and his friend were horsing around in the water, and I saw James dunk his friend totally under water. And my first reaction was to cheer.

My immediate second reaction was to reprimand him and tell him to never do that again (but inside, I was still cheering a little bit). 

I love his friend. I love his friend's mom, who has become one of my closest friends (see "How D'MAC Found my Voice").   But when you have a child with a disability that makes it very difficult for him to play like his peers, if he does, you cheer.  No matter what it is that he does. 

That's how I knew my friend would be cheering too, even though her boy was the one who went under.

When James was 4, there was an older (7ish?) boy on top of a slide, playing King of the Hill.  He roared at James to get away, with an "I'm not playing with you" scowl on his face. James kept going around the slide, pretending to go towards the boy, giggling and happy.  The boy became increasingly angry and looked like he was about to smack him as he screamed "Get away from here!  You aren't playing!"  I had to quickly grab James and pull him away (I wanted to lash out at the kid, but part of me wondered if he was on the Spectrum also, they were both so clearly missing each other's signals.) 

I worry constantly about how impossible it is for James to interpret what other people mean, and how difficult it is for him to play like a typical kid.  I know as difficult as it is now, it is only going to get harder for him as he grows and social relationships become more complex.

So when I saw James and his friend fighting in the water, getting pushed around, and pushing in return, with the lifeguard intervening and yelling at them, I had to cheer.

I had to cheer because last year I never thought I would see him doing this, and because my friend and I were the only ones at the pool who knew, at that moment, that both our boys had autism.

Sunday, June 5, 2011

Typical Insanity

I woke this morning to my 6 yr old standing next to my bed.

"Mommy, will you bring my file cabinet downstairs so I can play with it?"

Ugh. Sunday morning, during my hour of peace. We are finally at a place where the boys can get up and entertain themselves and we can sleep in a bit, except for the every 15 minute snooze alarm that sounds oddly like a squeaky Sheldon Cooper. 


I swear I'm going to get James's IEP to include that his ABA therapist must sleep over Saturday nights just to work on that.  So a normal Sunday morning has one of us getting up to complete some absolutely unnecessarily necessary task, then coming back to bed and falling alseep for 10 more minutes until the next Sheldon-esque call. 

The typical 6 yr old usually lets us sleep. But not today. 

Today Johnny had a new toy.  The 1970's metal file cabinet he bought with his own money at the neighbor's yard sale yesterday.  He played with it all day, locking and unlocking it, putting his animals inside.  He dragged it around the walkway and the living room on its metal wheels, propping it in front of him and making up songs about it to sing to his animals.

He had us bring it upstairs at bedtime and turned it into his nightstand. 
There, I thought.  Now it will just be a table and he can put stuff in it. 
And he'll go back to playing with his real toys.

But then this morning I heard in my drowsy state: "Fluffy, do you want to go into the File Cabinet of Fun?" and I felt the same little creepy chill I got when he told me he wanted to drive an ice cream truck when he got older.

I fell back to sleep and dreamed of scary clowns and freaky dolls, and when I opened my eyes, he was standing right in front of me. 


Actually, he probably said "Mommy" but it wouldn't have made any difference since this is the child I saw in front of me:

"You promised.  PLEASE?" 

I know, I know.   I'm coming.  Just go out in the hallway for a few minutes, you are starting to freak me out.

So I brought the file cabinet downstairs, and Johnny picked up where he left off, playing with his new cabinet. 

I looked over at James, running laps around us and singing another made up song to the same tune as Johnny's Fun House File Cabinet ditty, and started to laugh.  Then I wondered if Tony and I could combine efforts and write a comic strip about a quirky little kid, who is daily becoming more quirky than the one with the Dr's label stating that he is, in fact, medically quirky, and that kid's best friend, File Cabinet of Fun.