Down the Rabbit Hole

"Would you tell me, please, which way I ought to go from here?"

"That depends a good deal on where you want to get to," said the Cat.

"I don't much care where-" said Alice.

"Then it doesn't matter which way you go," said the Cat.

"-so long as I get SOMEWHERE," Alice added as an explanation.

"Oh, you're sure to do that," said the Cat, "if you only walk long enough."

And so it is on this daily sojourn with my son and the diagnosis that changed our lives, that I must remind myself over and over again, we are getting somewhere. True, life is not the destination, it IS about the journey. But the reality is as John Lennon put it so well, "Life is what happens when you are making plans." None of what we have experienced with our boy, or our marriage, was in our "plans." Stuff happens and that is just the way it is. How you respond, how you perceive it, is up to you.

For us, our journey and destination are now one: Simply, the state of well-being.

I didn't know we were part of an autism epidemic three years ago. I didn't know what a road lay before us. Had I known then what was going to transpire, I think I might have jumped off a bridge because it's only in looking back that I see more clearly just how much we have been through. I didn't see that giant boulder rushing toward us. We suffered a lot in the beginning. We were so confused and did not have the resources that are available now. As little as four years ago, information about biomedical treatment was just not available to the mainstream.

My son did not sleep through the night from his birth until the gluten-free, casein-free diet he went on this past May. For four years, I was physically and emotionally exhausted and actually am still recovering my health now.

Even so, I think it took me awhile for an understanding of this thing called autism to sink in. Now, that my son has turned five, I see it so very clearly now. When he was a toddler, it was harder for me to pinpoint, it was not so glaring - at least to me, an older mom at 42 with no other children, no friends our age with small children. It was something that slowly dawned on me. Now, I can see it in the children of others; can spot it almost immediately - still many pediatricians do not know how to diagnose it, or drag their feet.

Pediatricians were of absolutely no help to me at the time of Liberty's diagnosis, so I turned to the internet, like so many others and discovered "The Underground" as I like to refer to them now - those pioneering families of children with autism who were recovering their kids on their own. This is how I found the DAN! doctors. No one in my vicinity had ever heard the word.
So, the parents of newly diagnosed children will begin now to have more resources available, at least in the form of information. Jenny McCarthy came along and made the CDC shake in their boots; she spread the hope of recovery, made more people aware of the diet, and dared to say on national television that "no way in hell" would she vaccinate her child again. I respect her a lot for putting herself on the line. But she knows her mission.

Eventually, our voices will be heard. I wonder how loud we have to get, though? Maybe one day insurance will actually cover services. Perhaps these parents won't feel so alone as we did. I do my best to try and connect parents, basically to hope, where the "action" is, where the truth is. I did not want to join any groups in the beginning. I was too scared that if I joined a group, it would seal my little boy's fate. He was only 20 months. It was almost unthinkable to hang a diagnosis of "disabled" on my sweet baby. It still is, even today.

Thank God, I now have a doctor who said to me the other day, "If I wait for the hard science before I treat a child, I will lose a whole generation of kids, and I'm not willing to do that."

It really is like we fell down the rabbit hole and, as things keep getting "curiouser and curiouser," have spent our time ever since wandering around, this way and that, asking for the way through, the way home. It does feel like a dream, but it's a very large collective dream, now, isn't it?

So, we just keep walking along, following the well-worn paths through the woods that other parents have made for us, and in that way, ensure that we will, indeed, get somewhere.

Love.