Thursday, July 31, 2008

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


Mary said...

Okay, I'm scared. Scared because of our pediatricians are giving our babies shots when their is inconclusive data about the repercussions. Scared because the people who make toys for babies and children put BHA or lead in them. Scared because they put high sugar, chemicals, hydrogenated oils, etc in children's food so they'll EAT it. (Food is your medicine and medicine is your food, remember?) Scared because companies have no qualm about polluting our rivers and land with all the toxins they need to get rid of so their companies continue to profit--toxins our children play in, swim in, digest. . . Scared because who the hell are we supposed to trust? Why are these people getting away with this? Who is making these decisions? Doesn't he have children in his own life?
We don't even know what is in the needle our babies get shot with! I feel stupid for never having questioned what was happening before!
Thank you for this, AM.
Mary Sullivan/Walsh

Kim Stagliano said...

Hi - saw your comment on Age of Autism. 44. Boston born. 3 children with autism. Girls. Nice to meet you.


Mary said...

Hi Kim, I also have three girls. Alison is a close friend of mine so I've been following her blog. How are you managing?

MomofaVaccineInjuredChild said...

I too am a mother of a vaccine injured child. That is how I am know as "the mother of a vaccine injured child" on myspace and vox and cnn and oh well. I want to let you know I am there with you. I understand the struggle. You are not alone in your struggles. But you know what really pisses me off?

The legal term removal. You go into the doctors office and they say we have "removed" the mercury.
I am coughing at this point and wanting to say bull sht as I cough. The legal term removal means that the thimerosal (mercury) may be used in the production process of you r child's vaccine but has to be filter our. What ? Filtered out. I must have the dunce cap on. How do you filter out a preservative that is almost 50% of its weight is in mercury? TELL me HOW?
Well I go off on a tangent and I apologize but I had to sound off.
Angela Utley
Mother of a vaccine injured child

sismandeer said...

Alison, this is a great post. I just wanted to say that I think you ARE a warrior mom, and not a martyr mom. You're fighting for your son, and doing the best you can. You're standing up and making your voice heard. That makes you a warrior in my book. You don't need to be thin or "posh" to be a warrior. Keep up the good work.

Debbie said...

Just wanted to let you know that your post hit home with me today. And dang it if I'm now wondering if we need to knock eggs out of my son's diet too-haha.
Oh, this is quite the unexpected journey, isn't it? Thanks for helping me to not feel so alone in this.

Hummingbirder said...

We cut out eggs for my son (he's 3 now). He was an egg fanactic. I've seen big improvements. His WET diapers used to smell like sulphur and they don't anymore. He also takes Epsom salt baths. My son has not been vaccinated but became autistic anyway (I thought I was safe) BUT I believe vaccines are the primary reason for autism. God bless you and yours. I'd be happy to hold your son's hand too.

Vivayne said...

I am a mother of 3 girls, none autistic, but my heart goes out to you nevertheless. I can only imagine how this effects your family and am thankful for mothers like you who SOUNDOFF for mothers like me who are willing to listen. I vaccinated my first and feel guilt for it, however the next two have not seen a vaccination! Thank you!

channa said...

thank you so much for this blog.I am also a tired haggard mother fighting autism.
I am also a single mother. you brought many tears to my eyes,thank you for making me feel not so alone in my fight.