Taking CHARGE

Talking to the person from the UCD MIND Institute has got me thinking again about our participation in the CHARGE Study. When James was formally diagnosed in 2007, our case worker from the Regional Center mentioned the study and suggested that we call to see about participating in the program.


Back then, we had no idea what we were heading into (and a good thing too, or I'd have been tempted to wave a white flag and lie down for 10 years). We were concerned, upset, and wanted *answers.* Now, damnit! What do you mean, "we don't know?" Why not?

I called, got us started, worried about how I was going to coordinate these visits to UC Davis (3 hours, round trip) with my transitioning back to work from Family Medical Leave (FML). My hiring and working supervisor had left the company, the department head was pulling everyone back to their cubicles (I'd been largely telecommuting and meeting with clients down south), and ... well, wanted to see a different ROI, IMO.

Our team was losing people. It was not pretty and I heard a lot of sad stories while I was out on leave. My stomach was in perpetual knots and I felt like there was a large target on the back of my head.

It basically came down to this: my career, or my kids. It was tough for me (for a whole bunch of personal reasons), but I chose my kids. I loved what I had been doing. LOVED it. I'd worked darned hard to get where I was. It had been a personal battle against depression and other things to find something I really felt good about doing on the job and doing it. Very well too, if I say so myself.

But ... I did do it. I had my hurrahs and laurels and victory laps around the field. Now our kids needed me. Our family needed a stay-at-home parent. My husband and I talked it over. Oh I cried; we let go of some things. My husband signed himself up for a brute of a horribly long commute (1.25 hours each way if it's good & over 3 hours each way if it's bad); luckily, he also has a wonderful job, supervisor, department, and coworkers.

Then we went out to do the CHARGE Study. The weather was foul the months we had to make our trips. It messed up James' naps. I felt like crying some more when I saw my beautiful, sunny boy unable to follow and do some of the simplest tasks that my daughter could have done at a much younger age. James had his first blood draw. I think I still have some hearing loss from that session, as I held him in my lap when they did it.

But it did something else. It made me feel less helpless. I got to get out and talk with other people. People who had seen and worked with children with autism. I started feeling less alone. When I started feeling scared about what was going to happen, I could balance the not knowing with the assurance that at least we were trying things. We were helping put the target on autism, not the kids who are on the spectrum.

I had been feeling really guilty about being an older parent and possibly having done something wrong during my pregnancy with James. Looking around my while participating in the CHARGE Study made me feel a little better. There were younger (some much younger) moms in the same boat as I. We had a lot of company.

It now looks as though the study is recommending more autism research in the environmental arena. This is significant. What are we doing to our kids? Let's find out and STOP it!

Some random other lines of thought: I have heard some people who want a cure for autism. All I can truly speak from is my experience and own limited knowledge, and they lead me to think that the best cure is to stop it from happening before it begins. I truly believe that looking at where we live, things we wear, and what we eat is our best bet to finding answers and preventing many children from being born autistic.


We don't just grow in a vacuum, everything affects us. I think our heady discoveries in the last century or so have led us to be short-sighted and go oooh and ahhhh over things like plastics, electronics, and man-made food additives that prolong shelf-life and betters a company's bottom line. It's time to pull focus and see what these things are doing to us, in addition to what they can do for us (and business).

I have read other parents swear by changes in diet bringing about radical improvements in their child's abilities/personalities. I totally believe this happens. I also see that every child is different, and this is as true for the children on the spectrum as it is for those not on it. There is no "one size/answer fits all."

There is a meme going around on FaceBook that really strikes a chord: "My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE!" I agree with this 100% because I see this in my son every day.



So my thought for the day is take CHARGE! Look up the website. Google some information. Cry in your coffee (or beverage of choice). Then get out and fight! For our kids. For their future.