Dear Megan: Letters on Life, Love and Fragile X Book

CONTENTS

Introduction Every Mother Has A Story

Chapter 1 Welcome to FRAXA Mary Beth introduces herself to Megan, welcoming her to membership in the Fragile X club.

Chapter 2 What the Blind Palm-Reader Saw Fortune tellers, premonitions, and realities; coming to grips with the noting of having a retarded child, Mary Beth’s own little 'pity parties' she used to throw for herself

Chapter 3 Fragile X Research 1943 to Present It’s a short history, but maybe longer than you think. Starting with Martin and Bell observations in 1943, Herb Lubs first noting of the fragile site on the X chromosome in 1966, CGG repeats, how far the medical profession has come.

Chapter 4 Diagnosis and Dealing Having the original diagnosis done in Tulsa, how Mary Beth went from hating to loving Red Lobster restaurants, backtracking to the original diagnosis of MR on Robert in New York, hating the messenger, finding a nanny, learning that Jack also is mentally retarded, bed wetting.

Chapter 5 FRAXA’S Founding What we do, how Mary Beth has come full circle to the realization that inheriting the Fragile X gene may be a gift.

Chapter 6 Lobbying Mary Beth and Megan learn how to lobby Congress for research funding, aided by husband David in his retirement years.

Chapter 7 How Sweet It Is Girls with Fragile X often have few if any symptoms. National Fragile X Foundation’s conference in Los Angeles.

Chapter 8 Washington Life Why it’s special for Mary Beth and her family, even in the “slow lane.”

Chapter 9 Right On, Megan!
Congratulating Megan for doing a successful fundraiser for FRAXA.

Chapter 10 Robert’s Birthday Trauma time, some years are worse than others.

Chapter 11 All that Autizzing How Mary Beth’s parents called her 'our strange child.' How strange she really was a Fragile X carrier, and how carriers can be symptomatic.

Chapter 12 To the White House Mary Beth and David meet President and Mrs. Clinton

Chapter 13 Guilt Trips and Valentines Megan’s trip without the kids. Depression among carriers of Fragile X, including Mary Beth’s mother’s. Relationships with mothers, Megan’s and Mary Beth’s, the contrast. Lying to kids.

Chapter 14 So What Is Least Restrictive, Really?
The IEP (Individual Education Plan) process, inclusion, 1975 Congressional act to educate handicapped children, what’s happened since, what does 'least restrictive' (educational environment) really mean? Is inclusion fair to normal kids? Basketball story from Maine.

Chapter 15 Let’s Party!
How to win friends and influence taste buds. Why entertaining at home works for our family and how it can be done easily. Recipes.

Chapter 16 Your Tax Dollars at Work, Lobbying The NIH, NICHD, NIMH. Banbury Research Conferences; Dr. James Watson. Current grants for Fragile X research.

Chapter 17 Guardian Angels and Messenger Angels Jack loses his job, his job history, the problems mentally retarded have getting and keeping jobs. Berry-Kravis’ research project in Chicago.

Chapter 18 Necessarily Delayed Gratification Megan’s big trip is cancelled. Get over it, make it up later, but make love now. Have a party as diversion.

Chapter 19 Mother’s Day It ain’t what it’s cracked up to be.

Chapter 20 Making Do with Make-Believe What I coulda, woulda, shoulda said. Imaginary letters to the boys.

Chapter 21 Residential Placement The world’s most agonizing decision. How bad it is, how good it is.

Chapter 22 Right and Wrong Behavior How responsible for their actions can our kids be? Taking our kids to church. Woman who told Mary Beth she should feel like a real freak.

Chapter 23 What’s in a Name?
Changing from David Jr. to Robert

Chapter 24 To Have or Not Have Another baby, Kelly tells her story.

Chapter 25 Riveting Research More about Berry-Kravis’s drug trial. The What-ifs, should a drug prove to be effective.

Chapter 26 Cooking as Therapy Recipe for four-bean chili.

Chapter 27 To Boarding School Megan takes Jack to school, the agony and the coming-to-terms

Chapter 28 Mary Beth’s Excellent Adventure Dream Sunday morning, church, Mary Beth’s good fortune.

Chapter 29 On Marriage Troubled marriages, Mary Beth and David’s 40th anniversary, her views on marriage.

Chapter 30 ‘Tis the Season to be OVER The end of the holidays, getting everybody back to her or her groove. The January blahs and blues. Prospects for the coming year.