If you have just had a new baby with Down syndrome or have just found out that the baby you are expecting has Down syndrome, congratulations. Learning of your child's diagnosis can be a scary and emotional time, but the wonderful thing you will discover is that there is an enormous wealth of support and information.
can be very shocking to discover that your child will have extra
challenges and needs. Suddenly your expectations for your family shifts
dramatically and it can be quite an adjustment to make. Shock, grief,
fear or worry, and a sense of isolation are not uncommon reactions.
your child is a baby, it's likely that your entire family will need
extra support. Your baby may need medical care and support or
various therapies, but it's also crucial to support the needs of the
entire family as they adjust to their new family dynamics.
are extraordinarily lucky to live in a time when there is an enormous
wealth of support, both online and in real life. For many families,
getting in touch online was the first way to reach out and "meet "
others that have gone through the same thing. Discovering that you are
not alone is a very powerful thing.
Some of my favorite resources for new families:
Down Syndrome Pregnancy,
a website with a wide variety of articles and links to online resources
on so many topics related to expecting a new baby with Down syndrome,
or for those whose baby has already arrived. They also offer books for
download and purchase, including Diagnosis to Delivery, A Pregnant Mother's Guide to Down Syndrome, Your Loved One is Having a Baby with Down Syndrome, and Welcoming a Newborn with Down Syndrome: A New Parents Guide to the First Month.
Down Syndrome Diagnosis Network,
a group started by parents of children with Down syndrome who want to
"ensure that moms and dads who receive a Ds diagnosis receive current
information and support." It provides information, other families'
diagnosis stories, and ways to connect with families in your area and
online. They have a Facebook group
and also private groups for "Rockin' Families" with children of the
same age. The groups are designed for parents who have children 3 and
Babycenter Down Syndrome Board, a
public forum on Babycenter created as a support forum for people who
love someone with Down syndrome. It's a great way to connect and get
support from other families who have been through similar struggles,
whether it be medical struggles with your child, or just all around
support, reassurance and answers to questions. My own very first
connections with moms with kids with Ds happened through the Babycenter
board, and I am still in touch with those families today.
Babycenter Down Syndrome Pregnancy Board,
another public form on Babycenter designed to support parents with a
prenatal or possible prenatal diagnosis of Ds. The group owners are
also some of the women who started Down Syndrome Pregnancy.org and wrote
the Diagnosis to Delivery prenatal book listed above.
Local Down Syndrome Associations.
Getting in touch with your local Down Syndrome Association can be a
great way to get in touch with real families and find out what supports
are in place in your area.
Blogs. Reading blogs
written by families of those with Ds is a great way to get a glimpse of
what may be. Photos, stories and real-life words from those who've
been there can go a long way to calm some of your worries.
Books. There are many wonderful books about Down syndrome, some of them comprehensive informational accounts and others memoirs written by parents and even individuals with Ds themselves. A great place to start is The Parent's Guide to Down Syndrome. You can read my review about it here. Another favorite if you're more interested in reading accounts from other parents is Gifts: Mothers Reflect On How Children with Down Syndrome Enrich Their Lives.
Community Support/Medical Support/Therapies. Your child's hospital or doctors will likely make a referral for Early Intervention
services, who can help your child receive developmental support and
therapies. Your doctors will also help put you in touch with any
specialists that your child may need for medical care.
Time with Your Baby. Please don't underestimate the importance of getting to know your new baby, if
he or she has arrived. You will find that there is no greater person
to ease your worries than your sweet new child. As needed as it is for
new parents and families to have support, don't forget that ultimately
your role is to be there for this brand new person who is embarking on
their own unique journey in life.
As your child grows
your family's support needs will change, just as your child changes. In
time you will find yourself focusing on your child's education,
supporting their friendships and just living life without always
thinking about Down syndrome. Building a network of families,
individuals and organizations that can help you on your way can make
navigating your path so much smoother.