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Our PrefaceMay 20, 2004This morning Ben spontaneously read "NakedTommy," the title of the Rugrats episode on TV. I feltas though God was pressing gold coins into my hand.Years of questioning doctors, groping for answersthat were not forthcoming and living with a multitudeof fears were suddenly becoming resolved. Ben, noweight, is showing me for the first time that he canread. As his dad I could rest easy believing now, forthe first time since the questions arose when Benwas seventeen months old, he would have anesteemed place in this world.It is the lack of a means of communicating from themost primitive area of Ben’s brain, the central brain,which leaves Ben with all his voluntary muscleactivities impaired. To get around on his own Bencrawls, his legs are so unresponsive that he mostlyuses his arms and fingertips. From the arms andwaist up he is a little Hercules. He is not a
fragile
child, as is said in disability parlance, he has notubes, wires, pipes or hooks reaching into his heador body. He is free to explore the world by crawlingand gets into mischief right along with his threeolder brothers. His life may be limited by disabilitybut he has a unique intelligence which is workingaround it. He follows all of a growing boy’s naturaldrives.For example walking is not just a developmental
 
step it is a drive and still at age 8 Ben is driven toattempt walking. He must however be in thestanding position first which he does by climbing. Hemight climb on furniture, a brother’s or my leg andsome objects that are far less stable. He can not relyon his misconnected muscles or his sense of balancethat is either underdeveloped or not communicatingthe message. The results are we often find himcrying out from a precarious hold or more frequentlyhe is sprawled on the floor. He also crawls intospaces he can not back out.Perhaps it is his adventuring which keeps Ben notonly strong but healthy. Ben only had one sick dayout of school during all of 2
nd
grade not counting theannual visit which the school district insists he havewith the pediatric neurologist, that was only a lateday. For all of the doctors Ben has seen they offernothing that can improve his condition.Two years ago when Ben was six, in the hope of finding better medical resources I sold the familyfarm and we moved to a city. In the city of twomillion we found three pediatric neurologist, wherewe lived before there were none.Following the second visit with his new doctor after Ibrought Ben back to school I returned home and laidacross my bed telling myself that as a single dadwith three other kids to raise I could only let naturetake its course that this latest diagnoses was only aguess and not a thing to cry over and with that Icried hysterically. The recommendation from that
of 00

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Al

This was written when universal health coverage was not discussed. The solution has yet to be found for my son's disability but we have made progress with a lot of searching and travel.

reply09 / 23 / 2010
7BILLION HUMANBEING PEACE HUMAN RACE ...

health care in governments will never work its harder in canada then here

09 / 23 / 2010
Al

This is the story, my son in grade 4 is the coverboy!

reply05 / 15 / 2010
duponthumanite

Ben definitely is a fighter. And I like the thing that Jacob said, and his mate Michael.

reply01 / 22 / 2010
duponthumanite

Are television producers and political candidates really about 79?

reply01 / 22 / 2010
duponthumanite

So Ben is hypersensitive in his hearing?

reply01 / 22 / 2010
Al

Yes, and he seems to hear everything that is said aound him with a good understanding but he also experiences pain from sound we do not hear.

01 / 23 / 2010
duponthumanite

Medical cases ARE fuzzy to those in Special Ed.

reply01 / 22 / 2010
duponthumanite

Yes, the world is a cruel place for a three-year-old.

reply01 / 22 / 2010
duponthumanite

"Frosted over white as myelin". Great!

reply01 / 22 / 2010
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