Mud in Your Eye

Egg on your face…..

I’ve been thinking a lot about eggs and looking stupid these days. Strange combination, I know. Nick’s been craving eggs a lot. Only a kid on the Autistic Spectrum could take an otherwise healthy food and turn it into an unhealthy addiction. We will come to find out soon, that his leaky gut is letting bits of undigested egg enter his bloodstream, and his body is responding by fighting this perceived intruder with anti-bodies. He has become addicted to the toxic sludge left over, the undigested proteins hanging around in his head. This is making him giggle at nothing, whine and badger us, and sing repetitively while lying under the dining room table. Yet another food will have to be removed from his diet. The list of food he can have seems to get smaller everyday.

And on to looking stupid…I do these days, feel like I look pretty stupid. Whether I am carrying Nick at almost four years old, because it is faster and easier than the fight. Or changing his diaper, because he is so far from potty training. I watch myself, unable to stop as I preach to some poor, unsuspecting mom on the playground about vaccinating safely or lecture any available friend on the latest bit of fiendish Thimerasol cover up by the government. My speech is pressured, it feels urgent. I am so involved in autism that it’s shocking when I am reminded that other people’s lives are going on as usual and they aren’t that interested.

I didn’t want to be the mom of an Autistic kid. I pictured our lives so differently at this point. It’s almost as if that life is going on in a parallel universe; we’ve been able to buy a house, we had a healthy third child, we are carefree and consumed with the daily in’s and out’s of a typical family. When I made temporary peace with Nick’s diagnosis I thought I would become ‘Posh, Warrior, Autism Mom’. I would be thin and ready for battle. I would make it look good. I would not succumb to the role of ‘Martyred Mom’ driving from appointment to therapy session, twenty pounds overweight, with a worried, tired expression and a nearly empty wallet. Yet, that is exactly what I have become.

Just as I begin to well with self pity I think about our little guys battling Autism all day. Some might say they look silly; repeating themselves obsessively under their breath, funny body postures or repetitive gestures, hands dancing oddly in front of their eyes, all the hallmarks of kids on the Autistic Spectrum. They are my heroes. All of this behavior is helping them manage one overwhelming moment after another. They make these necessary accommodations without complaining because they haven’t known life without pain and confusion. They do what they need to.

But we Autism Mommies and Daddies with our stress borne weight gain and weary expressions and our kids walking on tip toes or reciting the ABC’s ad nauseum aren’t the only ones looking foolish. In fact we look fabulous compared to the likes of Paul Offitt and Julie Gerberding. We have our integrity. They have lost touch with their humanity. I’ve just finished reading David Kirby’s Evidence of Harm, about the Thimerasol/Autism debate and I don’t know how either of them manage their guilt and complicity in hurting so many babies. I wonder what kind of accommodations they have to make to help themselves get through the day. Maintaining that level of denial is hard work.

So, if it turns out that vaccines have nothing to do with Autism I will have egg on my face. I will admit that I was wrong and I will apologize to those whose reputations I have slandered. I will look stupid, but it will have been well worth it. Healing Nick is so much more important.

And so, for all the overweight, empty walleted, harangued and harassed Autism parents – I want you to know that I am with you. We walk this road together, and I would be proud to hold your child’s hand.

Alison Macneil