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A Journey Through Autism, Pt. 1 (2006-05-27 - 10:43 a.m.)

This entry is going to begins a series of new focus for this diary.

The main focus of this diary henceforth will be our ongoing journey with Stephanie. I will also be working on changing the template for the diary, as well.

Stephanie went through a battery of tests in August of 2003, two days after her 10th birthday.

In preparation for these tests (done under the auspices of Cook Children's Medical Center of Fort Worth, by the way), the following was submitted. Her mother experienced job stress, severe nausea and vomiting, dehydration, and kidney infection during pregnancy. Stephanie was born at 37 weeks (approximately 3 weeks early) and experienced slight breathing problems immediately after birth. Her development was slow, meeting major developmental milestones somewhat later than most peers.

Stephanie struggled with distractibility, poor concentration, immaturity, failing to listen to and adhere to rules (mostly at home), decreased empathy, sharing appropriately, and taking others' belongings. She was able to develop friendships, but had difficulty maintaining them. She had problems with impulsivity, excessive talking, losing things both at home and school, anger outbursts, arguing, defiance, poor frustration tolerance, mood liability, weight gain, declining self-esteem, fearfulness, nervous habits, needs for routine/sameness, and with language and listening comprehension. She also had high pain tolerance and sensitivity to sounds.

In the psychological evaluation, there are several pages of behavioral observations and test results. I won't quote all of these, but they seem to be consistent with the observations that we had given from home. The tests administered were Conner's Continuous Performance Test; Scan-C, A Test for Auditory Processing Disorders in Children; Trail Making Test Part A & B; Mary's Stories; Rorschach Inkblot test (she had tremendous difficulty with this); Child Depression Inventory; Revised Children's Manifest Anxiety Scale; Test of Problem Solving Skills; Child Symptom Inventory-Parent & Teacher; Parent Sensory Checklist; Children's Yale-Brown Obsessive Compulsive Scale; Australian Scale for Asperger Syndrome; Bipolar Checklist.

Diagnoses were Autistic Disorder (High Functioning Autism) and Anxiety Disorder Not Otherwise Specified.

We finally had something to go on. We had had trouble with Stephanie from the very beginning. We knew she was having developmental issues, and struggled in school. She started at a private school, the same one as her older sister. During the third grade, her teacher called for a conference and unloaded on us some issues that we really weren't even aware of. Sadly, this particular teacher was not capable of dealing with a student with Stephanie's issues. Neither was the school.

We knew that public school districts had special education programs (they must, by law provide them), so we removed Steph from the private school (with much sadness, as we were fond of the school) and enrolled her in public school. Fortunately (I think), we live in a part of Fort Worth that is serviced by Keller ISD. They seem to have a pretty good program for special needs.

We really didn't do much else for Stephanie at this time, other than work with the schools at providing special ed for her, and finally, in 5th grade, got her approved for what they call "Resource" classes in Enlish and Math. This got her exempt from taking the TAKS test (I could get on totally different soapbox about those, but I'll save that for another time) and provided some good teaching for her.

We had asked her pediatrician, Dr. Guy Lamere (I give his name because we believe him to be relatively incompetent as a pediatrician--this needs to be known), earlier if there was a possibility that Stephanie was suffering from Autism, and he would not even entertain the idea. Basically blew us off at that point. We had also become extremely disgruntled with him, because he never seemed to be at his office, instead passing off the children on his nurse practioners and rookie doctors.

Let me also interject here that Stephanie was kept up to date on all vaccinations through all these years. She was born in 1993. This will be extremely important in later journals.

Stephanie will be going into 7th grade next in August of this year (2006). She passed 6th grade with the help of Resource (kudos and much appreciation to Scott Reynolds) and did pretty well. There is a special version of test (comparable to TAKS), which I believe is called SDDA, and Stephanie did remarkably well on it. Yes, it is SDDA, standing for State Developed Alternative Assessment.

We have changed doctors. (Duh.) We now see Dr. Pierre Robert as our primary care Pediatrician. He is quite good and not afraid to think outside the box as far as autism and treatments go. We are also seeing Dr. Hamel for some other things, which I will go into later.

We have also found a parent support group that meets in Keller. This group is headed up by a nurse with an autistic son. These parents made our heads spin after our first meeting with them. We had previously been to a parent support group that met at the Cooks Child Study center (where Dr. Lamere's office is). These parents basically sat around and moaned and whined about their situations and how bad the schools were treating them. The new group doesn't whine and moan. They ACT! They learn, they research. Some of these parents have sunk their entire lives into the task of making their children better.

There are several things that I will say at the close of this entry. There will more, much more later.

First, and foremost, we finally have hope that we can help Stephanie get better. Things are happening, very positive things. We have the new support group, as well as Dr. Robert's input to thank for this.

Second, we, along with all the parents in this group, no longer accept traditional medicine's belief that autism is untreatable. We believe that there are causes that can be verified. We believe that there are treatments that work.

Third, we believe that there have been reprehensible actions on the part of pharmaceutical companies and our government. All of this will be tackled in future journals, as well.

That's it for now. There will be more. I also hope that this can generate some readership and response. There is hope for autism.

TTFN, y'all

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