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autism, seizures
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My Blog
Monday, 21 July 2008
An Introduction
Mood:  not sure
Topic: Introduction
So I realize I should start keeping a journal on the variety of interventions we have implemented with my son Evan. Beyond the obvious reasons such monitoring his responses to a variety of drugs, herbs, vitamins, and a many other therapies and strategies, as well as sharing these with others searching for recovery or improvement, I want to show the most how very complex the issues in the bodies and minds of these little kids can be, much more than their affixed label can ever convey. This label of autism, which, by the way makes me so furious and appalled every time it is pronounced - because, in my mind, it is utterly fraudulent, misleading and halts the search for real causes and real recovery.

Anyhow, I will not digress, as I really wanted to introduce the players first: us. My name is Andrea, and my son Evan is a delightful and handsome 6 year old little man! His developmental shifts still do not allow me to know him or describe his personality to you completely. He is not able to tell me with his words about his likes or dislikes, fears or joys, although he communicates in other ways, so I have some idea....but no, I don't know all about him or all that he could be. He is my first child.

It seemed like Evan began struggling early, but things became more pronounced somewhere between 18 months and the 2nd year of his life. Most kids who receive the diagnosis of autism show this developmental pattern, with some similarities in medical history as well: ear infections, frequent and early use of antibiotics, adherance to the US vaccine schedule, some delays in speech development, then followed by some peculiar ways of play and interactions with the world. Evan followed the above trajectory in front of my eyes and all these years we have not been able to really help him, despite the unbelievable amount of time, money and research put into discovering new ways that would finally relieve the underlying medical issues. There was a lot to be learned and I thought I have mastered it all, had the answers, and all we had to do is follow the plan of attack. However, despite my tireless efforts to learn and even help others learn about all the things that can be helpful biomedically for our kids, mine has been struggling more than ever.

For Evan, there have been very few clear responses to interventions and even fewer positive ones. And so I have been left really helpless, very humbled, and I've practically stopped talking out loud since our latest setback. These past few months have also been busier than ever, having to deal with not only an army of doctors, hospitals, tests, tutors, therapists, and teachers but also with the consequences of Evan's further developmental regression the reasons of which no-one could explain to me with certainity.

No-one can say I have not tried, and that I have not been careful. At times I have grown impatient and yes, I could not always afford the doctors nor could wait for them to get back to me any longer. Some decisions I had to make on my own. On some level I am sure I am blaming myself for the way things have developed, as there is a chance of that, but I am not strong enough to enter that arena and deal with that issue yet. I need all my strength for today, tonight, and tomorrow so that I can continue to do the best I can for Evan.

So I am going to use this blog to help me track things with my son and process all of it through writing. I am also writing this for those moms and dads who have non-responder children with autism or those so called "tough-nut kids". I still believe there will be answers for us, for Evan, and he will recover. I will never stop researching or believing that the answers are out there.

Posted by egerpatt at 10:32 AM EDT
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