“Eli Syndrome: By Will Luper”
Eli Gideon Luper… where to start? Eli is a pretty special little guy and just about anyone who meets him falls in love with his infectious enthusiasm and loving nature. He was born on March 15, 2008 and weighed a healthy 7 lbs 7oz. Due to the nature of most c-sections, Eli had some immediate breathing complications. After a week or two in NICU monitoring his breathing progression and helping him feed naturally, Eli was released and we happily rushed him home.
It was apparent immediately after birth that there was something going on with Eli. He had some cranial structure abnormalities, seemed to be a bit delayed in areas and had some posture problems. Along with some physical roadblocks, Eli seemed to be noticeably “distant” and didn’t have much interest in physical bonding. These minor, but all together problematic, issues were a glimpse of what Eli would be facing now and in the future.golf inflatable golf range for sale
Now for the fun part. Specialists, geneticists, therapists, pediatricians, and on, and on, and on. We worked hard to make absolutely sure that he was getting all the help he needed to meet milestones. His first couple of years were jam-packed with genetic tests, swallow studies, MRIs, X-rays, and allergy testing. You name it, and most likely his mother and I were studying it—finding a way to get him evaluated, tested, and treated.
Our motto was to take everything one day at a time, champion the little victories, and to keep looking for clues. It took me a while to grasp the idea that there was “nothing wrong” with Eli. It was difficult to watch Eli struggle and lag behind. BUT… as his mother, Karen, kept telling me, Eli is perfect just the way he is. God doesn’t make mistakes and Eli is just Eli. We often joked when people asked us what his diagnosis was, that he has Eli Syndrome.
Eli’s broad range of little setbacks made it difficult to pin down a diagnosis. All of his genetic tests came back negative. He progressed well in therapies. He was, for the most part, always happy to just be Eli. At 4 years of age Eli was diagnosed with Autism Spectrum Disorder. Phew!! Now we could call it something. Although Autism Spectrum Disorder is probably one of the most broad and all-encompassing diagnoses, it is at least something. One more step towards unlocking “Eli Syndrome”. So, here we are today.
For the most part our day-to-day life isn’t too different from yours. We just stay a little extra busy and get to have a bit more fun than you do! We and Eli have had the privilege of being part of the LLH family for three years. After being on the waiting list for a year and a half, now that he is in the program, Eli is able to have the consistency that we hadn’t been able to provide on our own. The progress we’ve seen in these three years has been nothing less than monumental. He is absolutely the most intelligent and loving child that I’ve had the joy to meet—and we get to call him son.
We have been so blessed by having this little guy as a part of our journey, and those blessings have only been amplified by everything the LLH stands for. We won’t be missing everyone when Eli heads on to “big boy school”—because we aren’t going anywhere! The LLH is our family now, and all who have grown to love Eli can expect to get lots of hugs for a long time to come. We truly love this place for how it has blessed our family, and now the responsibility falls on us to make sure that the mission grows. Here’s to a fantastic year for Eli and the Little Light House!