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New Parents

New Parents

Congratulations on your new baby! 

If your newborn has just received a Down syndrome diagnosis, you are probably experiencing a whirlwind of emotions. The first thing to understand is that you are not alone. In Massachusetts, there are 5,000 families whose children have Down syndrome. The MDSC represents the interests of all these families, providing critical support and programs, such as the Parents First Call Program, the latest information and opportunities to connect with a parent mentor.  

Parents First Call Program
For new parents of babies with Down syndrome, an opportunity to speak with other parents who have experienced what you are experiencing can be invaluable. The MDSC Parents First Call Program is a volunteer, state-wide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information.  If you would like to speak with a First Call parent, please call 800-664-MDSC(6372) or e-mail scullen@mdsc.org

New Parent Welcome Package
The MDSC offers all new parents of children with Down syndrome a welcome package that includes two books (Gifts, compiled by Kathryn Lynard Soper and Down Syndrome 101 by Natalie Hale), a new parent packet of information, a newborn onesie and a handmade baby blanket! To request the package, call 800-664-MDSC(6372) or e-mail scullen@mdsc.org.

New Family Socials
In 2012, the MDSC launched a new program for parents and grandparents of "new" or "newer" babies with Down syndrome to come together for informal support, networking and, of course, treats. Our New Family Socials have already expanded to include grandparents as well. The gatherings are held several times a year at our Burlington office. See here for complete information, including when the next Coffee is scheduled.

Online Resources

Recommended Books 

  • Down Syndrome Parenting 101 by Natalie Hale
  • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper. 
  • Common Threads: Celebrating Life with Down Syndrome by Cynthia Kidder and Brian Skotko. 

The MDSC has donated copies of Gifts and Common Threads to each public library in Masssachusetts for easy access by expectant and new families. These books are also included in the MDSC’s new parent welcome package (see above for details). Books donated by the MDSC are found in every library in Massachusetts. The NDSC has a recommended reading list as well. Woodbine House Publishers  specialize in books on a variety of developmental disabilities, including Down syndrome.

The Children's Hospital Down Syndrome Program hosts the Allen C. Crocker Speaker Series. These free talks are presented monthly and are open to the public. They are also webcast and recorded for easy viewing from home. New parents may be especially interested in this particular talk, Your Baby's First Year: What You Should Know.

Adoption
We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome.  You may contact them directly at (513) 213-9615. 

Support Groups and Play Groups
There are dozens of support groups and play groups across Massachusetts.  For a complete list, go here.

Health Care Professionals
As a new parent of a child with Down syndrome, there may be no better place to live than Massachusetts. With world-renowned medical and research facilities, Massachusetts boasts a wealth of resources and expertise in the world of Down syndrome.

Chief among them are:

  • Massachusetts General Hospital now offers a comprehensive Down Syndrome Program with four distinct clinics to provide care for patients throughout the lifespan. This includes an Adult Clinic (ages 21 and older), Infant and Toddler Clinic (ages birth-5), Child Clinic (ages 5-13), Adolescent and Young Adult Clinic (ages 13-21). The program can also provide consultations in a private setting for expectant parents who have received a prenatal diagnosis of Down syndrome. Call the program at 617-643-8912 for an appointment or visit the link above for complete information. 
  • Children’s Hospital’s Down Syndrome Program has been an international leader in the field for decades, offering multidisciplinary clinical evaluations for people with Down syndrome from birth until the age of 18. With each appointment, they are also able to make referrals and connections with any of the other specialty clinics at Boston Children's Hospital. The program is also a an excellent source of information that offers prenatal appointments. Call the program at (857) 218-4329 to set up a meeting with a developmental pediatrician or visit the link above for complete information.

Go here for a complete list of area Down syndrome clinics and programs.