Sunday, October 4, 2015

Day 4: The Value of Support

One of the first things many families with a child with a disability learn is the importance of support.

It can be very shocking to discover that your child will have unexpected challenges and needs.  Suddenly your dreams for your family take a new twist and it can be quite an adjustment to make.  Shock, grief, fear or worry, and a sense of isolation are not uncommon reactions.

While your child is a young, it's likely that your entire family will need extra support.  Your new baby may need medical care or therapies, but it's crucial to also support the needs of the rest of the family as they adjust to new family dynamics.

We 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 is the first way to reach out and "meet " others that have gone similar experiences.  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 under.

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 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.

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.

And don't underestimate the importance of getting to know your new baby. You will find that there is no greater person to ease your mind than your new sweet and beautiful child.  As necessary as it is for new parents and families to have support, try to keep in sight 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 needs will change, just as your child changes. You will find yourself focusing on your child's education, supporting their friendships and helping them to achieve their own hopes and dreams.  Building a network of families, individuals and organizations that can help you on your way can make navigating the path of supporting your child so much smoother and a lot more rewarding.

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