When Mindy Scheier’s son Oliver came home from school in 2014, the then-eight-year-old told her he wanted to start wearing jeans like his friends. It might seem like a common request, but for Mindy there was a challenge: Oliver has a rare form of muscular dystrophy, which causes physical disabilities.
This photo was taken just three days before we received Charlie’s autism diagnosis. We’ve now been on our autism journey for 4 years and 8 months.
It was hard to get to a diagnosis for Charlie. Doctors, specialists and therapists said to wait and see; that his delays were due to premature birth and that his communication challenges were because boys develop differently. We were told not to “worry about autism” because he could talk and make eye contact. I knew all the things I was seeing meant something, but my concerns were brushed off because I was a first-time mom!
It was a relief to finally get his diagnosis because it meant we could finally get him appropriate help. When this picture was taken, he was regressing and losing speech which happens to some kids on the spectrum.
But we quickly learned that getting the diagnosis was just the beginning! Before getting involved with ParentsCAN we felt lost. We didn’t know what to do and we were new to Napa so we didn’t know who to ask. But we knew we had to find Charlie help.
Our ParentsCAN advocate is available when I need her and really listens to my concerns. ParentsCAN empowers parents to trust themselves—when you’re a new mom you’re always being told, ‘Don’t worry!’ But my ParentsCAN Advocate said, “I hear you, let me figure out how to help you.”
ParentsCAN connects you to other parents who can guide you through this confusing time. I met other parents of children with autism who were further along on the journey than I was. I was amazed at the help you get listening to other parents—you don’t have to figure it out on your own—there is a wealth of experience available. Other parents were so generous sharing what they had learned and how they felt. Parent to parent works!
We are now finding our own “normal.” The challenges that come with Charlie’s autism have improved tremendously—he has worked so hard—he seldom has meltdowns now and he is working at grade level in a regular classroom.
I don’t feel like we’re fighting with autism anymore; it’s just become a different way of life for our family. It’s not about looking for the light at the end of the tunnel anymore; we’re turning the lights on in the tunnel and trying to appreciate the twists and turns and how far we’ve come on our autism journey.
At the inaugural Better Together prom, everyone made the prom court. The Better Together prom was meant to make people with disabilities, high school age and older, feel pampered and accepted, said organizer Erica Conway, a Napa dentist. Conway, whose daughter is a Justin-Siena freshman and was born with Down syndrome, said she was inspired by the Tim Tebow Foundation’s Night to Shine, a similar event for people with special needs.
Parenting a child is always hard, but this is so much harder. “People don’t understand the variations of Autism. We had a very difficult time coming up with a plan for Rukaya’s IEP. The school’s recommendations didn’t fit my child! Because of ParentsCAN I knew that if I was not satisfied with the recommendations I did not have to sign her IEP. Because I was prepared by ParentsCAN, we decided we would meet again after Rukaya had attended the school for one month.”
“During that time I would call my Advocate and ask her to tell me ‘am I crazy or are they crazy?’ I couldn’t be objective anymore. But I knew my Advocate would tell me the truth. I trust ParentsCAN – I can explain the situation and get an unbiased answer. ParentsCAN has no ulterior motive, other than to make sure that the kids who need help are getting help. Because of ParentsCAN’s guidance, I was able to work with the school so Rukaya can learn.”