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Lessons From The First Year Of Down Syndrome: Having A Strong Support System Is Critical

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I have heard people say that you need to have a strong support system if you are going to face anything tough in your life. I have even made that recommendation to some people without really understanding it. When we got the diagnosis, and as we’ve embarked on this journey, I have found how important it really is to have a support system.

However, if you’ve never developed a support system, it can be a daunting task. Is it just family, is it just friends? But what if they don’t have experience in dealing with Down Syndrome and all that comes with it? Then where do you go to get connected, and share life?

Fortunately, the Down Syndrome community is a loving community with their arms wide open, accepting new people openly, at least that has been our experience. So I want to help give you some ideas about where to get connected, and get support as you venture on this journey.

Virtual Groups

One of the first places we turned when our heads stopped spinning from the initial shock of the news when Kim was pregnant was virtual groups. Fortunately, Facebook has several groups that are of great interest. Here are some of the groups we joined that have been invaluable for sharing life with other families.

  • Michigan Parents of Children with Down Syndrome – This is a local support group for parents in Michigan. Many other states have them as well, so be sure to do a search for your group. Your genetics counselor may very likely have information on the name of your local group.
  • Down Syndrome Baby Steps – This is a great group specifically for those who are pregnant or have an infant with Down Syndrome.
  • Down Syndrome Holistic Mommies & Daddies – This is a support group for people who want to approach health from a more holistic perspective. There are almost 2,000 members as part of this group, with varying degrees of perspective on holistic health, from people who are wholly crunchy, to those who are just starting to think beyond western medicine.
  • Trisomy 21 Research – This is a great group dedicated to some of the current research on Down Syndrome, including dealing with some of the physical and developmental issues come with the extra chromosome.
  • Trisomy 21 Nutrition and Supplementation – This is another natural group, with a focus how to support our little ones through effective nutrition, including through supplementation.

Off-Line Groups

Books

There are literally hundreds of books about Down Syndrome, and parenting a child with Trisomy 21, but these are the couple that we have found most useful.

  • Babies with Down Syndrome: A New Parents’ Guide – We were actually given a copy of this book from our genetics counselor, and is great for understanding some of the facts around what Trisomy 21 is, and what you may want to keep your eyes open for. This was also available in our local library.
  • Parents’ Guide To Down Syndrome – This book is written beyond the simple facts, and is also a great source of support and inspiration.

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