Shane & Joe’s Story
I remember vividly our drive to the neurologist with our 12 month old son, Shane, in the back seat. We had been referred by his pediatrician due to the fact he was not walking or crawling yet. Friends had encouraged us with statements such as, “He’s a boy, they develop slower,” and “I’m sure it’s nothing.” As we approached the office my husband said, “It’s going to be fine.” Well, it wasn’t. At that appointment the neurologist was very concerned and wanted to closely monitor Shane’s physical progress. When he started walking about a month later, we breathed a sigh of relief. Disaster averted. Well, it wasn’t. We saw the neurologist every six months and about 15 months after our initial appointment Shane was diagnosed with PDD- NOS, a mild form of Autism. During that time, he had not reached many of the milestones he should’ve reached. Non-verbal, minimal eye contact, lack of social and play skills and sensory issues led to the devastating diagnosis at a little over 2 years old. With additional behavior issues appearing as he got older, his diagnosis was changed from PDD-NOS to Autism.
With a positive attitude and wanting more children, my husband and I visited a genetics doctor to find out the odds of having another child with Autism. We were told 3-5% chance. Seemed low. I got pregnant again and hoped for a girl since 80% of autistic kids are boys. We found out it was another boy and we hoped and prayed that he would be healthy.
Joe was born in 1999 and seemed to be developing normally in ways that Shane hadn’t. He had better eye contact, was very interested in our pets and was much more social as a baby then Shane had been. During his first 14 months we watched him like a hawk, looking for signs of typical behavior and signs of autistic like behavior. I remember the day I knew he was autistic. He was 14 months old, sitting in his high chair eating breakfast. Often these kids have obsessions with things being opened and closed. I opened the cabinet door, he started screaming. I knew if I closed it and he stopped crying, he would later be diagnosed. I closed the cabinet, he stopped screaming. I called my husband and said, “We have a problem.” Joe was formally diagnosed at 20 months.
And our journey changed from raising one autistic child to two.
Our life became filled with behaviorists, in home therapists, speech therapists, occupational therapists, neurologists, special education, IEPs, the Regional Center and much, much more. The days were hectic with appointments but the real challenge was dealing with and managing the obsessive behaviors and melt downs that so often happened.
In 2002, with 3 year old and 6 year old autistic boys, my husband came home and said he wanted to start a non-profit to raise money for Autism. I told him to have a good time and call me when it was over! Of course I came around and P.A.R. 4 Kids’ Sake was born (Providing Autism Research). This non-profit consumed us, along with raising our boys, for 10 years and we enjoyed every minute of it (well most!) With a lot of help from the community and many people, PAR was able to raise over a million dollars for the U.C. Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) for research as well as local organizations and special education teacher grants.
Although we were devastated when Shane was diagnosed and then again with Joe, little did we know how fortunate we would be to raise these two boys, live the life we do and travel the path that was set out for us. We have learned to appreciate the little things in life. The small accomplishments and milestones to most are huge for us. The people we have met, whether it be other parents, new friends, teachers and service providers, have developed into strong, lifelong friendships and relationships that have blessed us beyond words.
Shane and Joe are now 18 and 15 and enjoying a happy and healthy life. Although both were given similar therapies and learning opportunities, Shane is considered high functioning with mild autism and Joe is considered moderate. Shane is very active and enjoys working out every day at Club Sport, snow skiing, driving our ATVs in Tahoe and hanging out with his train loving friends. Joe is a silly, fun loving boy who enjoys asking people about their cars and favorite foods and likes to swim, hike, do puzzles and play on the computer. They are both involved in church, Young Life for special needs and Special Olympics. Our annual trip to Disneyland is a favorite for both of them and roller coasters are one of their favorite things! Our life is not without challenges and struggles and we continue to rely on our faith for strength. The rewards that have come far outweigh the challenges.
Shane and Joe have taught us a lifetime of lessons. They’ve taught us that it doesn’t matter what material things you have, not to worry too much about what others think of you, enjoy today and live in the moment, say what you think and love the people around you. We are grateful for the fact that, with this disability, our kids will never experience the anxieties in life that most people do because they live in the moment.
I’m excited to be a part of Sunflower Hill and its vision and purpose. To create a community for adults with disabilities where they can live safely and happily and also with vocational opportunities is a dream come true for parents like us. Having kids with disabilities brings such anxiety when thinking about their future. We worry about who will take care of them if they can’t take care of themselves, where will they live, will they be safe and who will be their friends. Sunflower Hill addresses all of those concerns and provides a community environment that any parent would want for their child as they move into adulthood. Sunflower Hill will meet the needs and desires of many adults with disabilities and I look forward to seeing it happen!
Written by Cindy Everson