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

The Conquer Fragile X Foundation Newsletter will now feature the "Parent's Column". The column will highlight parent group news, parenting tips, and best practices. Randy Green, the Conquer Fragile X Foundation Parent Group Coordinator, has provided our first column about an IEP (Individualized Education Plan) tool called the Positive Student Profile. This tool can be used by parents when negotiating educational services for their Fragile X affected children. It has been adapted by Orah Raia, who has graciously permitted us to reprint it here, in part. The examples provided in the Positive Student Profile are from the profile of Orah’s son Brian.

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

Parents Column
by Randy Green

Spring is almost upon us and spring is IEP season for children with special needs in public schools. A Positive Student Profile, as outlined below, can be a helpful form for parents and teachers to use during the IEP process. Parents can update the Positive Student Profile every year and include information from your child’s teachers and therapists. It is important that the profile focus on what your child can do. This will be helpful when setting up new IEP goals. The profile can be included in your child’s IEP as part of his/her educational status. The profile below is presented with standard questions, and examples of helpful answers.

Positive Student Profile

This form is to be filled out by the parent(s) to provide a “snapshot” of their child, which should be reflected in his/her IEP.

1. Who is my child? (Describe your child, including information such as place in family, personality, likes and dislikes.)

• youngest child; Jaclyn's brother, loves to help
• favorite subjects are the space shuttle and science, enjoys surfing the internet
• likes to discuss his accomplishments

2. What are my child’s strengths? (Highlight all areas in which your child does well, including educational and social environments.)

• imitates well, loves to help others
• has a great sense of humor, anticipates the needs of others
• reminds others of details (forgotten shopping lists; lights to turn out)

3. What are my child’s successes? (List all successes, no matter how small.)

• developed close circle of friends
• voted “most helpful” by his peers
• organized, a good role model for others

4. What are my child’s greatest challenges? (List the areas in which your child has the greatest difficulties.)

• inability to communicate clearly, which causes high frustration level
• difficulty with transitions and new places, dislikes unexpected change
• difficulty completing an assignment without assistance

5. What supports are needed for my child? (List supports that will help your child achieve his/her potential.)

• to observe and learn from 'typical' peers
• to have a circle of friends for support
• to have a routine which is structured, yet flexible, to allow for increased tolerance to change

6. What are my dreams for my child? (Describe your vision for your child’s future
including short-term and long-term goals.)

• continue to have a circle of friends
• expand his ability to communicate
• live as independently as possible

7. Other helpful information. (List any pertinent information, including health care needs that have not been detailed elsewhere on the form.)


Due to the highly imitative skills common to Fragile X children, my child needs to interact with typical peers as much as possible. My child's learning style is visually oriented, and he learns best through use of incidental learning, using information in ways that are functional, rather than through rote learning (for example, teaching how to add by counting apples in a store as opposed to adding numbers on a page). My child works best with short breaks in between tasks. When he gets upset, it is best to try and redirect him rather than become adversarial and force compliance. My child's great sense of humor can be very useful at doing that. My child has a great desire to be "part of the group" and does not like to be singled out; he wants to take part in everything his classmates are doing and particularly loves to help. Therefore, a cooperative learning environment works best for him.

Adapted by Orah Raia from Rainforth, B., Ph.D., PT., & York-Barr, J., Ph.D., PT. (1997). Collaborative teams for students with severe disabilities: Integrating therapy and educational services. (2nd Ed.) Baltimore, MD: Paul H. Brookes Publishing Co.

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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