Foetal Alcohol Spectrum Disorder: Parenting a Child with an Invisible Disability by Julia Brown; Mary Mather
Publication Date: 2014-08-20
Fetal Alcohol Spectrum Disorders by Diane Malbin
Publication Date: 2003-01-01
Fantastic Antone Grows Up by Judith Kleinfeld; Barbara Morse; Siobhan WescottFantastic Antone Grows Up is a field guide to life with an adolescent or young adult with fetal alcohol syndrome/effects. Under the best of circumstances, adolescence is a trying time for young people and their families. The budding adult seeks independence and autonomy while the resistant child within longs for protection and structure; questions about sexuality and work, social commitments, and solitary accomplishments loom large and can create a family battlefield. For the challenged and challenging young people with FAS/E, the circumstances as they begin maturing are never the best. In this sequel to Fantastic Antone Succeeds, young people with FAS/E and their caregivers report on their experiences coping with the problems of adolescence and young adulthood. Again the editors and authors have concentrated on the wisdom of practice, as they candidly convey which techniques worked and which did not during the difficult passages of the teenage years and beyond. The twenty-one chapters are grouped according to theme. Section one discusses the meaning of success for adolescents and adults with FAS/E -- the need to define success in new ways. Cindy Gere found her path to success, for example, through creative expression. She graduated from college with a degree in fine arts and successfully completed a program in art. Many of her paintings, including the one illustrating the cover of this book, provide a poignant and candid expression of what FAS/E means to her. Section two discusses strategies that work in areas such as counseling, education, sexuality, trouble with the law, and independent living. Section three covers what families need from the community, including innovative programs that help individuals with FAS/E, and how to get a diagnosis at adolescence. The book also contains important resources, organizations to contact, and internet addresses. More has been learned about how alcohol poisoning in the womb alters brain function and physical development since the release of Fantastic Antone Succeeds, but science is far from providing the answers that affected young people and their caregivers need. Until such answers are forthcoming, nothing can replace the voices of experience with their practical messages of coping, caring, loving, weeping, laughing, and -- more often than might be expected -- succeeding.
Publication Date: 2000-01-01
Resources & Support
A Caregiver's Guide to FASDPrintable booklet written by parents and professionals for parents and caregivers of children and teens with fetal alcohol spectrum disorders to provide you with ideas about caring for your children to help ensure they have the best lives possible.
FASD Family Night
A collaboration between Developmental and Behavioral Pediatrics and Mt. Hope Family Center. It offers an opportunity for families to come together each month to learn about how to best support their children. Contact Christie Petrenko at (585) 275-2991, ext. 241, for more information.
FASD Support Group
Contact Jennifer Faringer, M.S.Ed., Director, NCADD_RA, at Jfaringer@depaul.org or (585) 719-3480.
The Upstate NY NOFAS affiliate providing community education, training and parent resources, including a parent support group.
Do2LearnA resource for families of children with special needs. The website includes a variety of strategies and products to help parents and teachers address children’s needs in the areas of academics, social skills, and behavior management, as well as resources on disabilities and transitioning to the workplace.
FASD UnitedStrives to prevent alcohol use during pregnancy and supports individuals and families affected by fetal alcohol spectrum disorders. They provide an information clearinghouse and media center, an international peer mentoring birth mother’s network, family support networks, professional training, and public awareness.
American Academy of Pediatrics FASD FAQsAimed at health care providers. It was designed to raise awareness, promote surveillance and screening, and ensure that all affected children receive appropriate and timely interventions.
Parent to Parent of New York StateParent to Parent of NYS connects and supports the families of individuals with special needs by:
- connecting them, one-on-one, with trained Support Parents who have "been there before" as caregiver to a child with similar needs
- providing information & referrals
- providing trainings on a variety of topics in person, online, or by webinar
The Best I Can Be by Liz Kulp; Jodee KulpMom's Choice Recipient, Liz Kulp, as a young teen with Fetal Alcohol Effects challenged the world to peer inside her life and brain. Through her own writings the reader is taken on a life changing journey that will impact their thinking about how to help and understand children with brain damage due to Fetal Alcohol. "Mom, I want to write a book anout what it's like to have FAS/E (fetal alcohol syndrome/effects) I think people need to know ... and so began Liz's and my journey in writing The Best I Can Be - Living with Fetal Alcohol Syndrome or Effects. Liz was right, it was a story that needed to be told. Fetal Alcohol Exposure is a leading cause of cognitive challenges and intellectual disability in the western world. It is estimated that one out of 10,000* children born each year in the United States as FAS (Fetal Alcohol Syndrome) and one out of 100** have FAE (fetal alcohol effects). Research and experience has proven one label is not better or worse than the other. Over tens of thousands of newborn US children each year will have to learn to cope with this disability. It is time to come out of denial - alcohol consumption during pregnancy is not safe. Let Liz take you on our journey - it is a journey of hope, of dedication and of perseverance. Thank you Liz for your courage to share your story.The Best I Can Be Living with Fetal Alcohol Spectrum Disorders by Liz Kulp and Jodee Kulp is a recipient of the prestigious Mom's Choice Award for Best Young Contributing Author. The Mom's Choice Awards honors excellence in family-friendly media, products and services. Parents and educators look for the Mom s Choice Awards seal in selecting quality materials and products for children and families. This book/product has been honored by this distinguished award.