Trophies
By John Felker
Editor's note: The opinions expressed herein are those of the author exclusively.
By John Felker
Editor's note: The opinions expressed herein are those of the author exclusively.
My six-year old son Patrick recently received a third place trophy in the Penn Hills Elementary School Science Fair. He nervously approached the presenter to receive his award amidst applause and cheers. When he saw the trophy, he snatched it and gave the presenter a high-five. The smile on his face as he ran and jumped his way back to us was as wide as the pride and thankfulness I felt in my heart. Patrick winning a trophy was great and he displays it proudly in his room for all to see. Several hours earlier I
received a trophy of my own as I watched him explain to three judges in a noisy and crowded gymnasium the differences between wood and coal burning steam engines, diesel engines, and electric powered trains. My trophy is not ordained with shiny brass or ornate designs. In fact it is invisible unless you peer into my heart and understand the journey my family has traveled with Patrick for several years.
In March of 2005 at the age of four, Patrick (our youngest child) was diagnosed with the autism spectrum disorder PDD-NOS. This devastating news was somewhat expected as Patrick had exhibited many of the early signs of PDD-NOS such as delayed and limited verbal skills, living in his own world, and sensory integration problems. Patrick also displayed common characteristics such as spinning, flapping, and perseverating on household objects such light switches and balloons. Patrick was especially sensitive to loud noises and a crowded environment made him “off” before we knew what “off” meant. Birthday parties and church events were a nightmare as we were always the family leaving early with a screaming child. Our two older children were usually understanding given their ages (7 and 11), but they were being cheated from having normal experiences during these events. I remember one afternoon Patrick was playing on our swing like any typical child and the very sight of our lawnmower made him fearfully run inside the house holding his hands over his ears. This scenario played out every time we ran the vacuum, carpet cleaner, etc. Within two months of his initial diagnosis, Patrick was tested by a psychiatrist and was found to have the speech and communication ability of an 18 month old. Seeing these results in writing was difficult and was my first realization of the challenges that lay ahead.
Patrick qualified for intensive therapeutic treatment called wrap-around that included one-on-one time with a TSS and BSC, as well as family counseling from a mobile therapist. He also attended an early intervention pre-school that included speech therapy and was enrolled in Stepping Stones (autism spectrum disorder social program). These treatments along with prayer helped, but we didn't see a quantum improvement until one month after we began a casein (dairy) free diet. My wife Leslie researched the diet options extensively by reading books, talking with medical/psychology professionals, and networking with other parents. She talked me into the idea that we should try it and were stunned with the positive results. We then added gluten free and soy free to the combination and continued to see improvement, but not at the same level as we initially saw with the casein free diet. Over the next 15 months, Patrick continued to improve in all areas of his development with social skills developing more slowly than others. It was also during this period that he became enamored with trains. He immersed himself and the rest of the family into Thomas the Tank Engine toys, videos, books, and anything else that related to trains. I have to admit; it was nice to see him focus on something that had more life than light switches and balloons.
As Patrick entered kindergarten he qualified for an IEP that allowed him to have a shared classroom aid and speech therapy. He also continued a scaled down version of his wrap-around program including his afternoon Stepping Stones class. We were pleased and relieved by his progress in the first half of the school year. We continued the casein and gluten free diet, but relaxed the soy free component. In February, Patrick brought home a paper on competing in the school science fair. After some consideration and discussion with him, we decided to give it a try. Picking a topic was fairly easy as the school suggested that the student pick something they have an interest in. After several seconds of contemplation, trains were decided upon. The actual project topic became “Train Power and the Environment”. A research project was chosen with the focus on Patrick learning as much as he could about the subject. From February until April, Patrick and I went to work learning a great deal about train engines and their impact on the environment. I was pleasantly surprised how much Patrick already knew about the various types of train engines and how they work. The videos Leslie borrows from our local library for his entertainment educated him at a fairly high level given his age. Patrick and I read books, visited train museums, utilized the internet, and the whole family took a six hour Amtrak ride. Patrick worked on his project board by typing on the computer, cutting out pictures, and gluing them to the board. He spent time on the weekends and some evenings learning the facts and how to explain them to others. The project culminated with the Science Fair exhibition and awards ceremony attended by our entire family.
Being a parent of a child with autism can often make one feel like a mouse running through a maze. There are many dead-ends and more frustration than most can imagine. But hope and faith inspire us to keep searching for that path that will bring us to a point of healing. Patrick has come a long way in his journey. But we realize that we are still closer to the beginning than the end. There will be more trials, frustration, and dead-ends to overcome. But for now, we will cherish our trophies and imagine the possibilities.
In March of 2005 at the age of four, Patrick (our youngest child) was diagnosed with the autism spectrum disorder PDD-NOS. This devastating news was somewhat expected as Patrick had exhibited many of the early signs of PDD-NOS such as delayed and limited verbal skills, living in his own world, and sensory integration problems. Patrick also displayed common characteristics such as spinning, flapping, and perseverating on household objects such light switches and balloons. Patrick was especially sensitive to loud noises and a crowded environment made him “off” before we knew what “off” meant. Birthday parties and church events were a nightmare as we were always the family leaving early with a screaming child. Our two older children were usually understanding given their ages (7 and 11), but they were being cheated from having normal experiences during these events. I remember one afternoon Patrick was playing on our swing like any typical child and the very sight of our lawnmower made him fearfully run inside the house holding his hands over his ears. This scenario played out every time we ran the vacuum, carpet cleaner, etc. Within two months of his initial diagnosis, Patrick was tested by a psychiatrist and was found to have the speech and communication ability of an 18 month old. Seeing these results in writing was difficult and was my first realization of the challenges that lay ahead.
Patrick qualified for intensive therapeutic treatment called wrap-around that included one-on-one time with a TSS and BSC, as well as family counseling from a mobile therapist. He also attended an early intervention pre-school that included speech therapy and was enrolled in Stepping Stones (autism spectrum disorder social program). These treatments along with prayer helped, but we didn't see a quantum improvement until one month after we began a casein (dairy) free diet. My wife Leslie researched the diet options extensively by reading books, talking with medical/psychology professionals, and networking with other parents. She talked me into the idea that we should try it and were stunned with the positive results. We then added gluten free and soy free to the combination and continued to see improvement, but not at the same level as we initially saw with the casein free diet. Over the next 15 months, Patrick continued to improve in all areas of his development with social skills developing more slowly than others. It was also during this period that he became enamored with trains. He immersed himself and the rest of the family into Thomas the Tank Engine toys, videos, books, and anything else that related to trains. I have to admit; it was nice to see him focus on something that had more life than light switches and balloons.
As Patrick entered kindergarten he qualified for an IEP that allowed him to have a shared classroom aid and speech therapy. He also continued a scaled down version of his wrap-around program including his afternoon Stepping Stones class. We were pleased and relieved by his progress in the first half of the school year. We continued the casein and gluten free diet, but relaxed the soy free component. In February, Patrick brought home a paper on competing in the school science fair. After some consideration and discussion with him, we decided to give it a try. Picking a topic was fairly easy as the school suggested that the student pick something they have an interest in. After several seconds of contemplation, trains were decided upon. The actual project topic became “Train Power and the Environment”. A research project was chosen with the focus on Patrick learning as much as he could about the subject. From February until April, Patrick and I went to work learning a great deal about train engines and their impact on the environment. I was pleasantly surprised how much Patrick already knew about the various types of train engines and how they work. The videos Leslie borrows from our local library for his entertainment educated him at a fairly high level given his age. Patrick and I read books, visited train museums, utilized the internet, and the whole family took a six hour Amtrak ride. Patrick worked on his project board by typing on the computer, cutting out pictures, and gluing them to the board. He spent time on the weekends and some evenings learning the facts and how to explain them to others. The project culminated with the Science Fair exhibition and awards ceremony attended by our entire family.
Being a parent of a child with autism can often make one feel like a mouse running through a maze. There are many dead-ends and more frustration than most can imagine. But hope and faith inspire us to keep searching for that path that will bring us to a point of healing. Patrick has come a long way in his journey. But we realize that we are still closer to the beginning than the end. There will be more trials, frustration, and dead-ends to overcome. But for now, we will cherish our trophies and imagine the possibilities.
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