The Parent’s Guide to Down Syndrome: A Review

There’s a new resource for parents of children with Down syndrome. It may be just right for you.

The Parent’s Guide to Down Syndrome was published at the start of 2016 and is written by parents for parents. The co-authors, Jen Jacob and Mardra Sikora have assembled a remarkable amount of facts, parent stories, written and on-line resources, and collected wisdom that can be useful for parents raising a child with Down syndrome.

Jacob and Sikora have children that bookend the experience of raising a child with Down syndrome. Jacob’s son Owen is two years old and Sikora’s is in his twenties. Jacob also is part of the leadership of the Down Syndrome Diagnosis Network, an online support group for new moms, while Sikora has co-written a book with her son. They each bring their insights gained from their lived experience as well as the connections they have made throughout the Down syndrome support organization.

A reminder of an earlier time

The first half of the book is devoted to the very beginning of a child’s life and even before, with chapters on prenatal care, a birth diagnosis, and through the years of kindergarten. Having a daughter who is eleven years old, reading these sections reminded me of so much I had forgotten about those early years.

I had forgotten about what exactly “IFSP” stood for (“Individual Family Service Plan” for early intervention therapies federally mandated through three years of age) as well as wiping my daughters eyes with a warm wash cloth after they became encrusted due to narrow tear ducts.

I also learned about the myriad of health concerns that can be associated with a Down syndrome diagnosis. While I have had many friends whose children had heart issues, our daughter had two murmurs that closed on their own. So, I had heard of VSD, ASD, and Tetralogy of Fallot, but the book helped explain what each of these conditions were and how they affected the child’s heart.

There are also many resources–both factual and supportive resources–listed for parents to find further information about. But, what I enjoyed most, and therefore what I think many expectant and new parents will enjoy about Jacob and Sikora’s book are the numerous parent stories shared in the first half of the book.

It’s one thing to read and learn the facts about processing a diagnosis, or surviving the NICU, or coming to accepting a child with a diagnosis; it’s quite another thing to hear those experiences relayed by people who have lived through them in the parents’ own voices. I hope and expect many expectant and new parents will find comfort in reading some of the same thoughts they are having given voice by other parents, and then hear how those parents dealt with those concerns.

A view of the future

As much as I enjoyed being reminded of my daughter’s earlier days, and learning more specifically about health issues and parent experiences in the early years, I also found value in the second half of the book as that dealt with the years to come for my daughter.

Similar to the first half covering the early years, the second half takes the reader through teenage years, high school, the period of “transition,” which the book notes is referred to often by parents as “the cliff” when all of the routine and support provided through the school experience drops off as your child enters adulthood, and then into the adult years and the challenges, methods of support, and legal matters that need to be addressed.

Like the first half, the authors include vignettes of the lived experience, but in this second half, as it deals with older children and adults with Down syndrome, these individuals get to have their own voices represented. Rather than being told by parents what it’s like having an adult child with Down syndrome, the reader gets to hear from adults with Down syndrome.

A spectrum of resources

The Parent’s Guide to Down Syndrome is a book that any parent of a child with Down syndrome–from a newborn to an adult–can benefit from reading. If you are a new or expectant parent, the book will give you a glimpse of the many different types of experiences and lives you may live with your child. If you are a parent, like me, of a school-age child, the book will remind you of how distant all those concerns you had when your child was a newborn now seem, but how much is still left to face, though with the information and resources shared to meet those challenges; and, if your child is an adult, it will address those issues still yet to come, but also serve as a reminder of how some things may have changed since your child was in school, and what concerns a new parent may have so you can more effectively support them.

The Parent’s Guide to Down Syndrome is a bit of a “goldilocks” guide book. It remains standard for parents to receive the encyclopedic Babies with Down syndrome, which is impressive in its comprehensiveness, but overwhelming for the same reason and therefore is often “too much” for new parents to process. My own center published in 2015 Welcoming a Newborn with Down Syndrome: A New Parent’s Guide to the First Month, which as the title explains was intentionally focused on the very beginning of raising a child with Down syndrome and provides more brief information about the older years. For many this may be enough at the beginning, then they may seek information beyond those first few weeks.

The Parent’s Guide to Down Syndrome may be “just right” for many new and expectant parents: not too overwhelming, but comprehensive and informative on a variety of issues throughout the lifetime of an individual with Down syndrome.

To learn more about The Parent’s Guide, you can visit the website for the book and its Facebook page. You can purchase The Parent’s Guide at this link.

I had the pleasure of reviewing a draft copy of the section on prenatal testing and The Parent’s Guide graciously includes links to this blog. I also have the good fortune of knowing Jacob and Sikora personally. What is also revealed by reading this book is depending on how involved you choose to get in the larger Down syndrome community, you, too, may have the opportunity to get to know many of the parents whose stories are shared, as well as Jacob, Sikora, and, if really lucky, their sons.