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Down Syndrome Support

As a pilot program for parents and children with Down syndrome, ages 6-10, we are planning Monthly Get-Togethers. Some months for the children, and some months for the parents!  Playgroups for the children will involve the child with Down syndrome and a parent.  Siblings will not be included at this time.  The focus of this group is to provide social opportunities to help with the development of long term friendships—for children with Down syndrome and their parents. Call Sue L. at FRA (732-747-5310) for more information!

The Down Syndrome Parent Support Group, for parents with a child of any age with Down syndrome, meets four times per year in host family homes throughout Monmouth County.  Each meeting has information, support and socializing and a guest speaker. Topics include: medical issues, social relationships, behavior, long-term goals, inclusion, housing, NDSS conference reviews, and much more. This group is an affiliate of the National Down Syndrome Society.

The Meeting of the Moms provides parents with the opportunity to discuss issues of importance to families with young children, such as coping with the diagnosis of Down syndrome, and dealing with family members, friends and the community. Questions regarding medical concerns and developmental milestones are answered as well. Parents share ideas, parenting successes and community resources that have been helpful.  The group meets monthly in a host family's home.  Information, support and play time for the kids are part of each meeting.

One-to-one peer support can be arranged individually by the staff. Speaking with another parent who is coping with similar circumstances developmentally or medically with their child can be a source of emotional support.

Information Packets and Books--FRA and Dr. Denise Aloisio, a developmental pediatrician at Jersey Shore Medical Center, have collaborated on an information packet on Down syndrome for new families with a child with this diagnosis. The packet contains resources, medical and developmental information and articles about coping with Down syndrome. FRA also has copies of the following three books:

• Babies with Down Syndrome--A New Parents' Guide, ed. Karen Stray-Gundersen
• Early Communication Skills for Children with Down Syndrome--A Guide for Parents and Professionals, by Libby Kumin, PhD, CCC-SLP
• Gross Motor Skills in Children with Down Syndrome--A Guide for Parents and Professionals, by Patricia C. Winders, PT

The information packet and books are free to eligible families in the greater Monmouth County, NJ area, depending on availability.  Please call Sue L. at FRA (732-747-5310) to inquire.

Library Resources--FRA maintains a book lending library with several books related to medical, developmental and educational issues in children with Down syndrome. Books can be borrowed for three week periods by individuals in the local area. You may stop by the office to borrow books in the library.

	Down Syndrome Nutrition Handbook, by Joan Medlin
	Early Communication Skills in Children with Down Syndrome, by Libby Kumin
	From the Heart--Incredible Edible Gluten-Free Food
	Medical and Surgical Care in Children with Down Syndrome
	Teaching Reading to Children with Down Syndrome
	For the Love of Matthew: Growing Up with Down Syndrome by Janet Credit Houska
	Babies with Down Syndrome (in English and Spanish)
	Fine Motor Skills in Children with Down Syndrome

The following books for children were also purchased:

• Russ and the Almost Perfect Day
• My Friend Isabelle
• The Best Worst Brother

The FRA Down Syndrome News--Twice yearly, FRA publishes the Down Syndrome News, a newsletter for families in the central New Jersey area. Each issue includes articles written by parents about issues relevant to children with Down syndrome. Information about conferences, other newsletters, resources and other support groups is included as well. We welcome input for future issues. Please contact FRA at 732-747-5310 if you would like to be included on the mailing list for the FRA Down Syndrome News.

Down Syndrome Workshop--In the upcoming months, we are planning to arrange a special presentation in the central New Jersey area with a prominent speaker in the Down syndrome field. Check the website in the future for details.