Making Sense of Numbers

“All things began in Order, so shall they end, and so shall they begin again, according to the Ordainer of Order, and the mystical mathematicks of the City of Heaven.”
–Sir Thomas Brown

Today I’ve been reflecting a lot about numbers and dates. Such weighty significance in numbers, really. They are orderly and dependable as a rule, yet they take quantifiable account of the chaos that can unfold around us.

The seconds tick by in the day far too fast yet progress is gained much too slowly. The numbers drop off in the checking account before my eyes. Another page flies off the calendar each time I turn around. And, when it comes to autism, the numbers appear, flip and turn with each click, like I’m in the movie The Matrix–statistics that are unsettling and alive.

Today’s standout numbers for me are:

8.25.09: Today is the 2-year anniversary (I wrote about this last year) of the day that we were personally introduced to the word “autism.” It came so very unexpectedly, and it’s the day that the winds of change blew so hard it almost overtook me. We mobilized quickly to get answers. Things have never been the same since that date.

9.03.07: The lowest day of my life. It was Labor Day weekend and I remember being so sick to my stomach that I couldn’t barely stand up straight. I cried into a bathtowel hard–a tissue or even paper towel wouldn’t do. I couldn’t eat. I just watched and scrutinized every move of my baby in front of me as we began to lose connection with him. He was becoming so far away. My husband and I had just spent many hours in that previous week Googling autism, and it sounded positively damning. I remember us just crying together, “If this is what it is, what are we going to do?” Somehow, the human spirit kicks in and tangles with the supernatural enough to keep moving forward, hoping for a better day. We still have our heads up.

1 in 100; 1 in 66; 1 in 81; 1 in 10,000: These numbers must hold some sort of clue. Some direction to study. The past numbers of 1 in 150 kids being affected by autism as reported by the CDC is about to change, according to this report that says it is now weighing in at 1 in 100, and 1 in 66 among military families. The CDC may be ready to call autism an “epidemic.” You think? In Minnesota where we live, there is a harrowing study that came out saying that our state has the highest rate of autism in the country at 1 in 81 births. (It’s actually something like 1 in 24 for kids of Somali refugees living in MN.) And then there’s the clincher: the rate of Autism among the Amish is 1 in 10,000, which was our national rate of autism in 1987. Surely, if there was an honest study, we could find some links here.  Really, between genetics, environment and vaccines, what is going on? Which leads me to this important number…

9.09.09: Mark your calendar for this date. The National Autism Association is going to boldly ask the entire nation HOW MUCH LONGER? through a series of ads and press releases. The main message:

How much longer before our children have insurance coverage? How much longer before you remove toxins from vaccines? How much longer before you do a vaccinated versus vaccinated study? How much longer before you create federal laws to regulate restraint and seclusion in school? How much longer before autism families get federal aid? How much longer will our kids have zero resources? How much longer before you declare autism an epidemic? How much longer before you declare autism a national health crisis? How much longer before you test the safety of simultaneous use of multiple vaccines? How much longer until you address where children with autism will live after their parents are gone? How much longer before you admit the rise in autism is real? How much longer will you continue to call tens of thousands of the same story a coincidence? How much longer will you allow more vaccines to go on the schedule? How much longer before you fund real research? How much longer before our children get real answers? We’re waiting…

10.04.09: My baby boy turns 4. I know he has come a long way, but is it going to be enough? He will have less than 2 years before he hopefully is ready to enter Kindergarten. He will have had over 4,000 hours of therapy by age four, and 8,000 by Kindergarten. About $8,000/yr. of out of pocket costs go for special food and biomedical treatment. I want him to succeed. To think. To speak. To have friends. To be happy.

At the end of the day, it all adds up to this: my precious little boy is so worth it. Your child is worth it. Unearthing answers for those who come behind us is worth it. Each number or cold statistic reflects a life–precious and dear to parents and family–and to God. A thousand kisses. A thousand smiles. A thousand tears. A thousand memories. A thousand dreams. A thousand prayers. The odds are, it will all pay off someday!

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2 Responses

  1. ‘Somehow, the human spirit kicks in and tangles with the supernatural enough to keep moving forward, hoping for a better day. We still have our heads up.’

    Oh, yes.

  2. With every dime families spend its worth it, I was recently at a town hall meeting in support of Autism Insurance reform, and I spoke with a gentleman there, who was against the Health Care Reform, I informed him of the statistics and expenses families endure, he was shocked that Insurance did not cover the costs associated with Autism. Everyday I speak to individuals about awareness and the struggles we endure. Last year alone my wife and I spent $25000 out of pocket for therapy, its worth every dime to know that my son is on the right path towards recovery. Its very promising too that Legislation is in place to save us and do as President Obama hold Insurance Companies accountable.

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