Jared
by Laura Casey
Our journey with Jared began when he was born two months premature. He always required an extra amount of care, love, understanding and lots (and lots) of patience. He was in the NICU for ten weeks. His lungs were compromised and needed oxygen at home for the first year. He was hospitalized for RSV and pneumonia multiple times. Jared received Early Intervention Services since birth. Other services he received included feeding, speech, sensory, and occupational therapy. Jared fell behind in reaching many of his developmental milestones such as crawling, walking and talking. At the age of two he had his first seizure and was diagnosed with epilepsy. When Jared was five, during a simple procedure for ear tubes, we learned he had a cholesteatoma (cyst) in his ear which caused loss of hearing in the left ear.
At the age of three, Jared was diagnosed with Developmental Delays. The term that was used at that time was “Mentally Retarded”. As his mother, I had a hard time with this term. I was not ready to accept our son may learn differently than his older brother or his peers. Ted and I struggled to find the best ways to help Jared. We knew there was more to his diagnosis as there were times when his behaviors were explosive and unpredictable. His negative, aggressive behaviors including meltdowns, hitting, screaming, crying, destroying things in his room and hurting others sometimes lasted for hours. He had an extreme high tolerance for pain and did not sleep well. He was very particular about his things (mostly toy trucks and cars). He became obsessed with all sports. We noticed Jared had an amazing memory. He memorizes players, their numbers, and teams they play on. He would fall asleep scripting movies or announcers as they announced lineups during football and basketball games. It was exhausting and stressful trying to figure out what was happening to our little family as Jared’s negative behaviors continued. As a family, we learned over the years how to prepare Jared for difficult or challenging moments, like changes in his routines, going to new places or being around people.
After Jared turned nine, we had him reassessed. Once he was diagnosed with Autism, things finally began to make sense. At thirteen, he had back/spinal surgery to correct severe scoliosis. For much of his childhood, it seemed that every doctor’s appointment revealed a new health diagnosis or challenge to overcome. Over the next few years, we struggled to find resources in and around our hometown of Turlock, California. After Jared graduated eighth grade, we had an opportunity to make a change for our family and our future. We decided to move to Roseburg, Oregon, where there were resources we needed to support Jared. Local resources available to meet our needs included the FEATT Family Network, Community Case Living Management, Partners Camp at the YMCA, Special Olympics, and Unified Sports at Roseburg High School.
When Jared turned 17, Ted and I began to talk about Jared’s transition to adulthood. We made the decision to apply for legal guardianship of Jared when he turned 18. The decision would also impact our older son, Hunter, so we had many family discussions and did a lot of research. We took into consideration Jared’s cognitive abilities, and felt guardianship was the best decision for our family. This was a personal decision and not made lightly. I would suggest to any family making this decision to consider all factors and people which may be affected. It is important to include everyone in the discussion who may be impacted by this decision. Every family is different and has to do what is best for them. Jared is now 20 years old and attends Roseburg High School. This is his last year in the RHS Transition Program (House). We are thankful to have been impacted by amazing educators including Janet Stubblefield and Fawn Shilts. The guidance of these caring teachers has allowed Jared to succeed in many areas throughout these very influential high school years. The encouragement from Mrs. Stubblefield to join Unified Sports at RHS gave Jared an opportunity to be an active participant in a sport he loves so much. The leadership, coaching, and guidance, from Fawn Shilts and Arwyn Buller, gave Jared the confidence to play basketball alongside his peers, build vital social skills, and the opportunity to play in the OSAA Unified Basketball State Championships in 2018! Jared has developed many great friendships through this program.
The COVID-19 pandemic has impacted Jared in many ways. Our biggest struggle has been that Jared does not respond to virtual learning. He thrives with consistency and routine. Even when socializing and friendships are hard, Jared still loves being with his friends. He becomes extremely frustrated and upset at the mention of accessing his school virtually. We have seen an increase in aggressive behaviors during this time. We are hopeful Jared will be able to end his final year at RHS with some sort of normalcy. Jared really wanted to help with the Annual Unified Haunted House and not playing in his final season of basketball on the RHS court with his friends is weighing heavily on his mind right now. We are taking things one day at a time. Ted and Hunter are Jared’s personal support workers. Together, we are all creating new routines to help Jared get through this difficult time. Daily workouts at Fitness First, one-on-one basketball with Dad at the YMCA and “Brother Days” with Hunter--which include a drive down the freeway to the truck stop to look at diesel trucks--have been great ways to help Jared get his mind off of the current situation.
Our journey is like many others. There are challenges and there are triumphs. Jared reminds us every day, that life can be simple. Jared loves his family, his dogs (Ellie, Arfur & Dexter), and his friends. He is an avid collector of Diecast diesel trucks, NBA jerseys, hats and long socks. He enjoys listening to music, playing basketball, spending quality time with Hunter watching diesels at the truck stop, being stuck in traffic, going out to eat, going to the dunes and camping with his family. This is Jared’s world. It is simple. We have been blessed to surround ourselves with amazing, supportive people who understand our world and who most importantly, understand Jared. The FEATT Family Network has been a great resource for our family as we are continuously reminded that we are not alone on this journey. We were connected to FEATT through a good friend who was already involved. Through the network we have made lasting friendships, enjoyed many parent nights, paint nights and family BBQ’s.
Life is a journey with many paths and detours along the way. Some of the paths are smooth with beautiful green grass along each side. Other paths are bumpy, dirt roads with boulders, rocks and weeds. Regardless of the path you are on, remember it's all part of your journey. I have been asked many times, “When does the journey of raising a child with Autism or special needs get easier?” My answer is, “It doesn’t necessarily get easier. As children grow, their needs change and the challenges are different. As parents and caregivers; we learn how to adjust, adapt and grow with each new challenge.”