Utah author and blogger Ashley Nance did not feel there was anyone she could relate to when she was growing up. She hopes her book, "Crystal Puzzle: Growing Up with a Sister with Asperger's" (Familius, $14.95), will be a companion to siblings who have family members with learning disabilities.
Nance recalled a time when her friends were afraid to approach a group of people with disabilities. They asked Nance to speak to the group.
"It was then I realized I had an unusual gift and I had to use my God-given talent to help people," Nance said during a phone interview with the Deseret News. "I wanted to help as much as I could with raising awareness about Asperger's and the things that I learned growing up with Crystal."
Nance's sister, Crystal, was diagnosed with Asperger's at the age of 9. "Crystal Puzzle" is a true story written from the perspective of an older sibling who learns from her sister with Asperger's.
"If you want somebody to grow, you water them with love and not criticism," Nance said.
Asperger's syndrome is on the autism spectrum and is generally characterized by high intelligence, narrow interests and a lack of social skills.
Nance recalled an instance in school when she realized how others perceived Crystal. She knew then that it was up to her to defend Crystal and educate people instead of going along with the crowd.
Nance admits that it can sometimes be frustrating to be happy to have a sibling who has a disability, but it is important that people allow themselves to be frustrated because if not, the problem can be exacerbated.
"I think for other siblings and people who might be frustrated, just be present," Nance said. "Let the moments that are positive count. Hold on to them and let them make the hard stuff worth it."
Nance, who is a member of The Church of Jesus Christ of Latter- day Saints, writes openly of how faith has helped her understand her sister and love her for who she is.
Her parents were also an important part of Nance's education to understand Crystal's needs. The family learned together, and the parents would often share information so all could be educated. Nance said while it may be hard for parents to accept help, there are services available. Parents should also not compare children, she added. Compliment children on the positive things they do and empower instead of manipulate.
Nance points out that some parents may attempt to force children with disabilities to comply. Her parents, however, coached and encouraged their children to make good decisions and told them that if they didn't, there would be negative consequences.
As Crystal became involved in abusive relationships, Nance said, it was difficult to support her through those relationships, especially when Crystal knew they were wrong. Even so, the family continued to love and pray for Crystal.
"What she needed to know was that I loved her where she was," Nance said. "It gave her the strength to do what she needed to do."
Nance also addresses the grief cycle.
"I think one of the hardest things for siblings and especially for parents is that we feel like we are not allowed to feel sad that the child with a disability is different," Nance said. "We sometimes torture ourselves in feeling that it is bad to feel that way - it is bad to not be elated that we got blessed with a child with unexpected challenges. We can be really unkind and unfair to ourselves when we feel like that."
Thinking of it this way has been a breakthrough for Nance. It has helped her come to peace with things that are completely out of her control.
"Somebody told me once that if you have met one person with autism, you have met one person with autism," Nance said. "I think that is true with Asperger's, too. ... Every person is a person first, and they have their own personalities and quirks."
Nance addresses sibling rivalry, crushes, jealousy, dating and independence in "Crystal Puzzle." She is honest about her feelings - which may seem judgmental at times - but readers should remember that the book is written from the perspective of a child. This view is very unique and sometimes humorous.
"Crystal Puzzle" does not include swearing or sexual situations. Nance includes words used as classification and labeling to show that words can be hurtful even if they are not intended that way.
The end of the book includes sections with recommended general reading, information about the autism spectrum, information about sensory integration disorder and "A Chat with Crystal."
Nance blogs at ashley -nance.com.
Email: caresaalexander@q.com