Fragile X, Fragile Hope: Finding Joy in Parenting a Child with Special NeedsFor the multitudes of parents facing the challenge of raising a child with special needs, Fragile X, Fragile Hope affirms that they can survive the devastation of the unexpected diagnosis, the lost dreams, the confusion of treatment options, the sleep deprivation, the painful misunderstandings of friends and family--and that more than survive, they can find a way through this chronic stress and grief back to hope and joy. Elizabeth Griffin's stunning, honest book shows how parents can move from profound grief to embracing parenting a special needs child. Elizabeth's son Zack is a Fragile X child with autistic tendencies. Like most families, the Griffin family's prayers were not answered with a cure for their child, but rather with the miracle of God's sustaining grace that carries them through each day. Elizabeth says, We experience so much joy in parenting Zack, despite our heartache over his limitations.... I have to admit that prior to Zack's entrance into my life, I viewed children with special needs as a tragic burden. I remember hearing a speaker on the radio say they wouldn't trade the experience of having a special needs child for anything. I thought, "Liar! You're just saying that to be positive. You don't really mean it!" Now that I've worked through the initial grief, anger, and fear that Zack's diagnosis brought, I have to agree with the man on the radio. There is a deep sense of love and joy that I've found in parenting a special needs child that I never expected, and that I am grateful to have in my life. Fragile X, Fragile Hope helps all of us grapple with our faith in the midst of adversity. |
From inside the book
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Contents
Note | 11 |
A Late Bloomer | 17 |
Desperate for Someone to Listen | 25 |
Diagnosis | 33 |
One More Skill One More Connection | 39 |
Special Moms Club | 47 |
Unresolved Grief | 55 |
Turning a Corner of Acceptance | 61 |
Overcoming Bitterness and SelfPity | 73 |
Trusting the Kindness of Others | 79 |
Connecting with Words and Games | 89 |
Ready to Tackle the Next Thing | 95 |
When Did Life Get to Be So Good? | 105 |
Common terms and phrases
angry arms asked autism baby bite bitterness bottle cause of autism Chapter cheered chicken nuggets child chronic stress cried diagnosis disabilities early menopause emotions exhaustion eyes face feel felt FRAGILE HOPE fragile X syndrome friends GEORGE ELIOT give grab grief Guilty hand heart HELEN KELLER honey hope I-nu-tie Jay and Taylor keep kick knew laugh learned Lijah listened little boy living look LORD miracle Mommy months moon by night mother Mother Teresa needed never night normal okay pediatrician peekaboo play potty-trained prayed prayer QUINN replied SHEILA WALSH Shlafer sleep smiled someone sorry spoiled brat struggling sure sweet talk tears Thanks therapy thing thought tickling toilet told took voice walk wanted watch week wonder words X chromosome Zachary Zack's development