I've told my "Taco Bell" story multiple times over the years -- to school teachers, to young adults who have worked with Jeremy, to my friends and so on. My story begins in the year 1996 when our family was driving to St. Louis to see a specialist who would help us recover Jeremy from his disability of autism.
Jeremy was almost four years old when he was finally diagnosed. He was profoundly affected and considered severe by the doctor's standards. For the first couple of years we had Jeremy placed in a developmental preschool which meant that I drove 45 minutes to and from our house on a daily basis. It was wearying and time-consuming.
Although the occupational and speech therapists at this preschool did their best, I knew there was something non-traditional that needed to be done to better help our little boy. While visiting with another parent one afternoon I learned of a company called "National Academy for Child Development" that specialized in improving children's potential for learning. After much prayer, we decided to enlist the support of NACD to help recover our son.
On this particular day our family was traveling to St. Louis for our first visit with Bob Doman, Founder and Neurodevelopmentalist for NACD. Working with NACD would be costly and require extensive daily therapy at home, but we knew that NACD would be able to tap into Jeremy's dormant potential. I prayed that God would make it clear by giving me a 'vision' of where Jeremy could aspire to be. I knew that it would be important for us to believe that Jeremy could make significant progress given the right structure and plan.
Midway between St. Louis and Kansas City is the small town of Boonville, Missouri. A Taco Bell sits along the highway. Rick suggested tacos for lunch; although surprised with his suggestion, we soon found ourselves walking into this restaurant. Rick took Megan to the front counter to order while I whisked Jeremy to the bathrooms.
Many children with autism suffer strange fears and unusual behaviors -- our little Jeremy was no different =( The past several weeks had been difficult because Jeremy was showing great fear of the toilet seats. In an effort to alleviate fears our little boy would stand two to three feet away -- which wasn't optimal for many reasons. My voice became firm as I coached and gently pushed Jeremy forward. Jeremy howled and wailed like someone being torn away from his beloved blanket. "NO!" he yelled, "No!" Even more firmly I coached Jeremy until finally the deed was done. Jeremy and I wearily bolted from the restroom only to find the few restaurant gatherers staring with horrified expressions as we exited the restrooms.
With a questioning look, Rick took both children to the car while I finished placing the order. While waiting I took notice of the young employee who'd taken our order. He was fidgeting with his little black tie with a look of slight anxiety in his eyes. There were just three of us waiting for our orders. "Do you want to know why our son was screaming in the bathroom?" I blurted out to the employee standing in front of me. "Now where did that come from?!" I wondered. Again, "Do you want to know why our son was screaming in the bathroom?" I insistently pursued. "Well, sure," was his reply with a shrug of his shoulders. The other two gentlemen leaned in to hear as well.
"Well, our son has autism and he's going through a fear of the toilet seats right now," I began. "I have to be firm so that he'll get over this fear. One can't be afraid of toilet seats all their lives," I stammered on. Everyone took on a look of "Oh, yeah. I get it," then settled back into their usual places. But the young employee sort of smiled sadly and said to me, "I have autism, too."
I'd never met an adult with autism before. What a revelation to see a young man standing before me who was clearly able to work, to converse and understand relationships! After a few exchanges I learned that he'd attended regular public schools, still lived at home and was now working at Taco Bell. He hoped to move into an apartment of his own very soon. It was a balm to my soul to see someone who'd so obviously recovered from the debilitating disability of autism. There were little signs of his disability, as I reflected later, but none so obvious for the casual eye to observe.
As I walked to our parked car with our sack of tacos, it suddenly dawned on me that this not-so-chance of a meeting was a divine answer from God to me. He was giving me a glimpse of who Jeremy could become -- a functioning member of society with the capacity to know others, including his Creator. My heart swelled with gratitude and I resolved to always expect great things from Jeremy. I would share this story many times over the years to ensure that others would expect the same.
Once again, God had proven Himself to be faithful. I am reminded of the bible verse that says, "I will instruct you and teach you in the way you should go; I will counsel and watch over you." Psalm 32:8. Throughout the years God has consistently laid before us various therapies and opportunities for Jeremy. It has not been an easy road, but it has been rewarding to see Jeremy's progress since those early years of severe autism.
Jeremy is now twenty years old. He is able to communicate functionally, not so well, socially. Jeremy now works for a company that puts medical kits together for a local laboratory. It is repetitive work, but one that Jeremy seems to enjoy. Jeremy is considered moderately high-functioning at this point. Living alone is not an option, but we are still hopeful. Recently I found a website that helps build and restore brain cells. It was recommended to me by two people within a short window of time. Jeremy loves working these computer games -- and, I plan to register myself next month =)
For more information on NACD and Lumosity, please see these websites:
National Academy for Child Development (www.nacd.org)
Lumosity (www.lumosity.com)
Tuesday, July 31, 2012
Sunday, July 15, 2012
Megan's Eye Troubles
I come from a long line of worriers. As a teenager I vowed not to carry on the family tradition and was fairly successful at this -- until the birth of our first child, precious and adorable, Megan.
As Megan grew through her toddler years and into early childhood, I began to understand the part of life that included worry. Although I was a pediatric nurse at Children's Mercy Hospital, I didn't know much about common childhood ailments. Most of my nursing skills resolved around really sick children with cancer.
Watching Megan struggle through common illnesses, I became an innate worrier. To keep myself grounded, I would call my closest friends and asked them questions.
Then one morning three year old Megan asked, "Mommy, why do I see two of you?"
I was helping Megan buckle her pretty white patent leather shoes so we could soon leave for church. "What?!" I asked with stunned clarity and an escalating heartbeat. "Mommy, I see two of you. One right there, and one right there," she said while pointing her little finger to two unseen spaces in front of her. I leaned back to get a good look at her eyes. Sure enough, her right eye was veering inward. Survival mode kicked in as I fought to control the panic cycle within my heart. I'd taken care of lots of children who had vision issues related to their brain tumors.
It didn't take long to place a telephone call to our pediatrician. He didn't express much concern because Megan wasn't showing any other symptoms besides one crossed eye. She wasn't walking lop-sided, falling down or showing signs of nausea. In fact, Megan was happy as usual =) But I still worried. "What if ..., " kept pulsing through my mind. With a heavy heart I waited for Monday morning to arrive when Megan could be seen by a physician. Throughout the night I prayed and prayed and prayed, still worrying about the possibility of Megan battling a brain tumor.
The next day Megan was examined by a renowned children's eye specialist and later that day underwent a MRI of the head. We were sent us home with the promise of news within a couple of days and Megan was put on an antibiotic for a stuffy nose and cough that she'd had for more than a week. That night I tried hard to pretend that nothing was amiss, but inside I felt confused, scared and ... still worried.
It was almost midnight when we received the good news that Megan's MRI was normal. The doctor wasn't sure why Megan's eyes were turning inward, but thought it might be related to sinusitis that hadn't been diagnosed (pressure from the sinuses on the nerve that moves the eye). She wondered if the antibiotic had reduced the swelling of Megan's sinuses so that the optic nerves were no longer being pressured. No one knew for sure. But it certainly was good news was that Megan's wayward eye was no longer veering to the right! I was relieved and grateful for God's provision.
Almost exactly one year later it happened, again. Only this time I wasn't as scared. I'd been down this path before and realized that my worry did nothing to ease the pain of uncertainty. Once more Megan's eye returned to normal after being given an antibiotic. From then on we would be more wise and cautious about watching for signs of sinusitis. To date, Megan hasn't wrestled with this condition for a third time, although she still tilts her head slightly to the right when she watches television.
As the years have passed, our family has battled various health issues and injuries. It hasn't been easy and I will admit, sometimes I regress and worry. But I work hard to maintain an inner peace during times of stress or concern. It's easy for me to slip back into the worry-mentality. I still talk to my friends when feeling the need to be 'grounded'. I try to remember that my worry doesn't help, and, in fact, often makes the situation even more difficult to bear.
The one thing that helps me is to pray unceasingly through those stressful or painful situations that present themselves. As I pray, I lay claim one very special Bible verse:
"So do not fear, for I am with you; Do not be dismayed, for I am your God; I will strengthen you and help you; and I will uphold you with My righteous right hand." Isaiah 41:10.
... and in time, I usually feel better.
As Megan grew through her toddler years and into early childhood, I began to understand the part of life that included worry. Although I was a pediatric nurse at Children's Mercy Hospital, I didn't know much about common childhood ailments. Most of my nursing skills resolved around really sick children with cancer.
Watching Megan struggle through common illnesses, I became an innate worrier. To keep myself grounded, I would call my closest friends and asked them questions.
Then one morning three year old Megan asked, "Mommy, why do I see two of you?"
I was helping Megan buckle her pretty white patent leather shoes so we could soon leave for church. "What?!" I asked with stunned clarity and an escalating heartbeat. "Mommy, I see two of you. One right there, and one right there," she said while pointing her little finger to two unseen spaces in front of her. I leaned back to get a good look at her eyes. Sure enough, her right eye was veering inward. Survival mode kicked in as I fought to control the panic cycle within my heart. I'd taken care of lots of children who had vision issues related to their brain tumors.
It didn't take long to place a telephone call to our pediatrician. He didn't express much concern because Megan wasn't showing any other symptoms besides one crossed eye. She wasn't walking lop-sided, falling down or showing signs of nausea. In fact, Megan was happy as usual =) But I still worried. "What if ..., " kept pulsing through my mind. With a heavy heart I waited for Monday morning to arrive when Megan could be seen by a physician. Throughout the night I prayed and prayed and prayed, still worrying about the possibility of Megan battling a brain tumor.
The next day Megan was examined by a renowned children's eye specialist and later that day underwent a MRI of the head. We were sent us home with the promise of news within a couple of days and Megan was put on an antibiotic for a stuffy nose and cough that she'd had for more than a week. That night I tried hard to pretend that nothing was amiss, but inside I felt confused, scared and ... still worried.
It was almost midnight when we received the good news that Megan's MRI was normal. The doctor wasn't sure why Megan's eyes were turning inward, but thought it might be related to sinusitis that hadn't been diagnosed (pressure from the sinuses on the nerve that moves the eye). She wondered if the antibiotic had reduced the swelling of Megan's sinuses so that the optic nerves were no longer being pressured. No one knew for sure. But it certainly was good news was that Megan's wayward eye was no longer veering to the right! I was relieved and grateful for God's provision.
Almost exactly one year later it happened, again. Only this time I wasn't as scared. I'd been down this path before and realized that my worry did nothing to ease the pain of uncertainty. Once more Megan's eye returned to normal after being given an antibiotic. From then on we would be more wise and cautious about watching for signs of sinusitis. To date, Megan hasn't wrestled with this condition for a third time, although she still tilts her head slightly to the right when she watches television.
As the years have passed, our family has battled various health issues and injuries. It hasn't been easy and I will admit, sometimes I regress and worry. But I work hard to maintain an inner peace during times of stress or concern. It's easy for me to slip back into the worry-mentality. I still talk to my friends when feeling the need to be 'grounded'. I try to remember that my worry doesn't help, and, in fact, often makes the situation even more difficult to bear.
The one thing that helps me is to pray unceasingly through those stressful or painful situations that present themselves. As I pray, I lay claim one very special Bible verse:
"So do not fear, for I am with you; Do not be dismayed, for I am your God; I will strengthen you and help you; and I will uphold you with My righteous right hand." Isaiah 41:10.
... and in time, I usually feel better.
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