Virtually all families must confront trying events that change their lives forever.   It took more than a year for us to learn why our grandson, Ezra, was not developing as he should.  He lacked eye contact. He had delayed development in motor skills. He made arm flapping motions and moaned routinely. Crawling and eventually walking were slow developing.  He did not produce those first sounds and words a baby makes.  An early supposition was that he had “Duane’s Syndrome.”

Shortly after his third birthday in the winter of 2011,  Ezra was diagnosed with a form of autism, fragile X syndrome. It’s a genetic disease, which is the most common cause of inherited intellectual impairment.  It can range  from learning disabilities to more severe cognitive or intellectual disabilities.  Fragile X syndrome is the most common known cause of autism or autistic-like behaviors.  Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.

For a full school year and part of another, I watched Ezra weekdays, including taking him to and from the Chandler campus of Foundation for Blind Children, where he got therapy, while his parents worked.  (Ezra is not blind, but early on, he had surgery on the muscles of one eye ball.)  After his diagnosis, Ezra got a wonderful variety of therapists, who patiently focused on specific part of his development, including occupational, speech, physical and habilitation.  Wonderful help and support.  Today at age 6 1/2, Ezra is in first grade in a classroom for special needs children in a public elementary school.  In September, he was named “Student of the Month.”   He now says some words and seems to understand conversations and instruction.  He lags in toilet training, but has the quickest hands on an iPad and iPhone. He has a gentle disposition, stands out with his curly blond hair and has clearly laid out his likes and dislikes.

His parents and we have worked to develop the Fragile X Families of Phoenix chapter of the National Fragile X Foundation.  Our chapter seeks to bring together families with children or siblings with the disease, provide support, encouragement and connection to resources.

My wife and I have recently read “Becoming Mrs. Rogers: Learning to Live the Fragile X Way” by Cindi Rogers. Cindi has magnificently and candidly documented the experience of raising two sons with fragile X syndrome, which is the most common form of inherited intellectual impairment and part of the autism spectrum. She and her husband Chris were doubly challenged when their second son, Joe, exhibited the characteristics they had discovered with son, Jake, born two years before in 1989. So little was commonly known about fragile X 25 years ago. The medical community was very much in the dark. The Rogers chose not only to explore what was known, but to improvise and adapt to teach the boys through the terrain of physical, mental and emotional challenges. Each has had very individual issues.

“Becoming Mrs. Rogers: Learning to Live the Fragile X Way” richly captures a Littleton, Colo., couple’s fearless venture into making the lives of Jake and Joe meaningful.  (The Neighborhood Publishing, 2014, 288 pages).  They have become an inspiration to parents who can see what determined parenting can accomplish.

Our own family has met with, and interacted with, the Rogers as we have learned to give our grandson the therapies, training and love that he needs to cope with fragile X. The book is a guide for maximizing the development of children having the genetic condition. The book takes the reader through the normal experiences of birth and following the boys’ development and then discoveries about their impairments. Besides developmental delays, the boys were in emotional chaos, screaming, scratching, biting and defying instruction. Cindi put her own career aside and they relied on Chris’ plumbing work, later from his own plumbing business.

It is so heartening to read how the Rogers reached out to educators, business operators, neighbors and friends as a team that made so many experiments work. Both boys found jobs and make their way to work and relish their accomplishments. Cindi, who has become a national spokesman and trainer for fragile X, has been successfully giving hope to young parents stunned and feeling helpless with infants diagnosed with fragile X. Her book serves to allay fears and despair, but supplies practical solutions for the hurdles that lie ahead in caring for their children and giving the family some sense of hope. The Rogers’ dedication is timely in the face the rising diagnosis of autism

The book demonstrates that employing creative methods of step-by-step, sequential instructions allay the child’s anxiety and reluctance to go forward. Using many pictographs, photos, video and role-modeling, Cindi and Chris succeeded at breaking resistance and getting the boys to succeed.

Much of the book, with many short chapters, lays out Cindi’s relentless problem-solving instructions for Jake and Joe so that they can negotiate the steps to self-sufficiently — bathing, dressing, preparing meals, and other routines of taking care of themselves.  Cindi’s blog continues to tell their story.

In time, the boys have mastered their tasks and serve themselves to be role models for others. The Rogers are now systematically planning their retirement years, full of travel in the RV called “Rocket,” as their sons seek to live separately from them with assistance from others.

We, of course, wonder how Ezra’s years will unfold while his parents, his sister and grandparents are all there to help him, then as events require other care.

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