a lot of you that read this blog probably also read ali’s blog. so you probably already know all about her six degrees charity fundraiser she is working on right now. but just in case you dont, you can go here or here to read more about what she is doing.
and you can click on this:
what you might not know is how autism has touched our life. when our daughter mckenna was born, we knew within six months that there was something not okay going on with her. she hadnt gained much weight. she didnt cry. she didnt respond to us. we started doing tests to find out what was wrong.
we went through two years of tests. nothing came of it. at the end, her pediatrician told me that she wouldnt torture mckenna with any more tests. no more needles, bloodwork, x-rays, MRI’s, cat scans…she told me that mckenna likely had an undiagnosed syndrome and that as long as she kept growing at her own pace and stayed healthy we would “wait and see”.
three years later, Newsweek came out with a magazine spread on autism. this was in 2000. my father in law sent it to me because a lot of what he had read reminded him of mckenna. after reading it myself, i had to agree and we got her tested. when she was five years old, she was diagnosed as “on the autistic spectrum”.
what does that mean? well you go through a lot of research. you read a lot online. you try diets and vitamins. and then, for us what it meant was to carry on just like we always did. it didnt change our lives at all to have this diagnosis, other than to have a name to explain our daughter’s behaviors. and even when you give the name, people bring up images of kids in helmets banging their head against the wall and Rainman, neither anything like mckenna.
one year ago (or two) during her tri-annual IEP she was tested extensively by many experts in the field. our new diagnosis for mckenna is LIF. (limited intellectual functioning) which is really just a pretty phrase for mentally retarded. neither phrase bothers me much. it doesnt mean anything to me other than a name. she still has autistic tendencies, but the autism diagnosis is off of her records.
for six years, we all thought mckenna was autistic.
my belief is that she still does have an undiagnosed syndrome of some kind. something that would explain not only her limited functioning but also several physical traits that dont add up. but for now, there are no answers for us. it doesnt change anything. mckenna is who she is right? right.
but autism. it scares me. i dont know why it happens. none of us do. and that is unacceptable to me. i know there are a lot of diseases out there, some deadly, that have no cure. but autism is near and dear to my heart. the latest research shows 1 in 150 children will be diagnosed with autism.
that is not okay.
and something can be done.
this epidemic doesnt sweep a nation without a reason.
so, if you can help, please do. the lowest donation is $10. if ali’s badge is the number one badge on march 31, kevin bacon will personally match her total to donate to autism speaks.
it would be so amazing if that could happen for her. for her child. and for all of the children and familes that are affected in this world.