Harris Hollin



Harris Hollin
Founder, CFXF
Emeritus Director, NFXF

BOARD OF ADVISORS
Martin Blackman
New York, NY
Jennifer Jaques
London, England

Elissa Boory
Cherry Hill, NJ

Nick C. Jones
Marietta, GA

Jeffrey Cohen
W. Bloomfield, MI

Ray G. Kalil
Nashville, TN

Ofer David
Haifa, Israel

Joseph Kerzner
Toronto, Ontario, Canada

Rosalee Davison
Baltimore, MD

Allen Mason
Palm Beach, FL
Sheila Engelstein
Palm Beach, Florida
Alan H. Miller
Palm Beach,FL

Marti Gammon
Miami, FL

Moshe Modai
Tel Aviv, Israel

Randy Green
Pembroke Pines, Florida

Asher Naim
Jerusalem, Israel

Kimberly Grimmel
Deerfield Beach, Florida

Samuel J. Rosenfeld
Chevy Chase, MD

Joseph Gurwin
Great Neck, NY

Phyllis Siegel
Owings Mills, MD

Arnold J. Hoffman
Palm Beach, FL
Vi Werner
Minneapolis, MN
 

www.hollinbooks.com


Please visit this website and view "The Handcolored Antique Book collection of Harris N. Hollin". The CFXF Founder and President has compiled a simply amazing collection of hand colored antique books and, with pleasure, shares them on his website. Only 5% of approximately 13,000 handcolored plates are viewable now, with more added all the time. Get there by linking from www.cfxf.org!

New...Parents Column

This is the second newsletter issue in which we have featured a column written by and for parents. The new "Parents Column" features parent group news, parenting tips and best practices. In this issue, Tonii Kelly, the CFXF Parent Group Government and School Advisor, writes about the importance of selecting and coordinating the appropriate services for young people, and ensuring their eligibility for those services.

UNITED WAY DONATION REMINDER
Anyone wishing to contribute to CFXF thru the United Way may do so by using our number 32236

 

Planning for the Future of FX-Affected Child By Tonii Kelli

This year our son, John will graduate from public school. How will his life change and what will he do in the future? As children grow, family and friends often ask that scary question, "What happens now?" We are prepared with answers. But that preparation began several years ago...

Parents learn that often there is no relationship between a child's eligibility for services, their need for services, and the availability of services. Until now, most services have been offered to us through the public school system and other related providers. However, that ends upon high school graduation or at age 22, whichever comes first. Therefore, we prolonged John's eligibility for services by allowing him to remain in school until age 22. After graduation, adult services in Florida become available as one is eligible and as funding available, not as one has need for services. We had heard about the Med-Waiver program, a publicly funded program that provides home-based services designed to keep young people in their homes. The program allows parents to "waive" residential care in favor of home based services and keep the member of the family at home. At the time we applied, the waiting list was long. John was still in school and participating in a job-training program known as Project Victory, so his need for services was being met.

Upon receiving Med-Waiver status two years ago, several doors opened for John. A support coordinator came to our home to develop a plan that outlined his skills and his future recreational, employment and living goals. Using this plan as a tool to direct John's transition, his lofty goals seemed achievable. Obtaining Med-Waiver status before high school graduation enabled us to create a bridge between John's youth and adult services. This alleviated our greatest concern, that of John's isolation from friends and peers. He needed to develop another "cast of characters" in his life before moving away from those prominent in his daily regime at school.

Another critical goal of the Med-Waiver program is to support a client's choices in his or her own community. The ability to make choices is a learned skill, and involves an ability to discriminate between all the options available. John's fragile X limits his ability to evaluate possibilities. Yet, when encouraged, John does have definite ideas about what he'd like to do with his life. He is learning to envision his future as something other than his role as our son.

In the coming years John will have to make decisions about what kind of work he would like, and where he would like to live. Can he do these things independently? Probably not! Can he do them with appropriate supports in place? Why not?

During the recent graduation ceremony from his job-training program, which was combined with the program's prom, I nearly cried as John walked across to receive his diploma. He only made a few (wrestling) gestures, and kept his cap on. Afterward, the prom began. I was lost in thought and nearly missed the announcement: the kids in his class had chosen John as Prom King! Wouldn't you have cried, too?

 

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Harris Hollin, Founder ~ Karen Fay, Past President
PO Box 37 ~ Walnut Creek, CA 94597
Tel: 925-938-9300 x1
Fax: 925-938-9315
Email:natlfx@fragilex.org
Web: www.fragilex.org

NFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 84-0960471
CFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 65-0910605