For those who don’t know, my daughter Samantha is now being cyber-schooled via Pennsylvania Virtual Cyber School ( www.pavcs.org ). The reasons are many. At the end of sixth grade our local SD passed her with “D-” grades. We had been asking our SD since 3rd grade to retain her because she wasn’t mature enough for the grade she was going into. She had the intelligence but with ADHD (the distracatability kind) she wasn’t able to focus in a regular classroom. Cyber-schooling has been a total success thus far. At the end of 7th grade (her first year with PAVCS) she had 4 A’s (she had 2 different grade levels of math) and 1 B. At the end of this year she had 3 A’s and 1 B. Ok so now you’re probably thinking this is great but what does it have to do with autism? With Sam’s permission I am posting here an autobiographical essay she wrote for Language Arts this year. So here it is.
This essay is about a very sensitive event that occurred in the life of my family and subsequently my own when I was six years old. However, it actually began when I was five and my little brother (that this essay is primarily about) was two. In May of 1999 is when my parents noticed changes in my little brother, Rodney Delp Jr., affectionately known from birth as JR. He woke up one morning no longer able to speak. The rest of this essay is going to explain the events that unfolded from that point on and how those events have molded not just me but my family. The changes that occurred in our entire family have been blessings in some ways and trials in others.
In September of 1999, my little brother was evaluated by the staff at Poly Clinic hospital’s early development center. The results were not good as he was diagnosed with global delays. Strangers began coming to our home in the weeks, months, and years that followed. Speech therapists, developmental therapists, and behavioral therapists were coming to our home three days a week. I was five then and didn’t understand nor did I want these people in my home giving all of their attention to my little brother. For almost an entire year it was like this until the second evaluation came.
On August 29 2000 my world and that of my families was rocked to its very foundation. My little brother, for whom I protected, loved, and spoke for after his lose of speech, was diagnosed with Autism. Autism is a spectrum of developmental issues that effect speech, imitation skills, ability to play with others, and to a lesser degree gross and fine motor skills. Autism for our family was a nightmare in the beginning that consisted of three-hour temper tantrums because JR could not communicate his wants and needs in an effective manor. He would also get aggressive towards my parents and me, because of the frustration and confusion he was experiencing. Life for me got much harder as I felt very torn between the love I had for my little brother and the hate I held for this thing called autism.
My mother knowing what autism was from personal experience was totally floored, as JR’s autism was so much different from what she had experienced. She told me just recently, that the first thought that went through her mind was “I am going to lose my son.” Compared to what she had experienced, JR’s autism was mild but she thought he would get worse with time. Maybe it would have gotten worse, but with the proper early intervention, bio-medical therapies and educational programming, he has gotten better over time.
In the years since JR’s diagnosis, much has changed and most of these changes have been for the betterment of both JR and the healing of our family. JR is now ten-years old and goes to a school that specifically educates children who have autism. JR can communicate with us now using a system of pictures to build sentences. This has been progressing into a communication device of a computer nature where he presses the appropriate picture and the computer says the words for him. He is still for the most part without speech but understands everything that is said to him or said in his presence. The school has begun a reading program for him to see what he can read. Apparently, he has been reading for some time now. Everyday is a new developmental milestone that all though is severely delayed it is being mastered. And in the long run does it matter when he learned to tie his shoes or is it more important that he can tie his shoes?
So yes, the changes that occurred in our entire family have been blessings in some ways and trials in others. Nevertheless, as a whole I think we as a family and probably because we are, still a family have weathered the storms pretty well. Now we see more of the glorious sunsets that God has to offer as opposed to the tornado known as autism. My personal perspective has changed as well. I went from a self-centered child to one who likes working with people of all ages. So much so that I volunteer two or three days a week at a local residential care facility for the elderly, I baby sit my little brother for my parents so they can have some alone time and go out occasionally. I have more understanding and compassion for the down trodden and the less than perfect of society. I have much less tolerance for those who make people feel down trodden and less than perfect.
So the question in our home for sometime after JR was diagnosed was “if we could go back in time what would we change?” and the obvious answer then was we would take JR’s autism away. Now, I don’t think any of us would take away the trials of autism for the gifts resulting from it and from my brother, are more real and important than the losses we experienced all those years ago.
I cried when I first read this, of course. Sam was just 13 when she wrote this and I think it is a perfect example of the maturity she possess, though doesn’t always show . She is a much more compassionate and sympathetic to others situations. And all though she doesn’t get as involved in the cause as I do, she does understand why I can get a little “rabid” about it. She, her best friend and our surrogate daughter, Kayla and myself went to DC in June for the Green the Vaccines rally. Her picture (which is also on my yahoo group) from the rally is here: