31 for 21: Road Map to Holland (a book review)

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome

By Jennifer Graf Groneberg

This book came recommended by women on the Babycenter Down Syndrome board.  Every so often, someone will ask for reading suggestions, and this is one of the books that is regularly mentioned.

Jennifer Graf Groneberg is a mom of three boys.  Her youngest two are twins, and one of them has Down syndrome.  She writes about the babies’ birth, Avery’s diagnosis, and the next two years of life. 

The book title references an essay written by Emily Perl Kingsley.  She’s a mom of a child with Down syndrome, and she wrote that having a child with special needs is like ending up in Holland instead of Italy (where you planned to be). 

Overall, I enjoyed this book.  I appreciated Groneberg's attention to detail.  She captured moments that resonated with me – from how different relatives and friends received the diagnosis, to meeting another older child with Down syndrome, to starting Early Intervention (therapy and other services), to her growing sensitivity to others around her using the “r” word.  She’s very honest about her feelings in each situation – she openly recounts moments of comfort, shock, fear, delight and even numb avoidance. 

It’s helpful to know that other people have those same feelings and experiences.  I have those moments burned in my mind – when the doctor(s) first talked to us about Down syndrome, when I met another mom of a child with Down syndrome for the first time, when a friend casually used the word “retarded” in a sentence and it stung.  Road Map to Holland plainly says how another woman and family walked through those moments.  I think if I had read it any sooner, I would have cried a lot.  Probably in a good way.

If you are looking for a book that is all happy-happy, this is not it.  This book is honest.  There’s a lot of joy and acceptance, but there’s also some pain and sadness.  It’s all about the journey.

31 for 21: What is Down Syndrome Anyway?

I don’t want to shortchange anybody on Down Syndrome Awareness month.  If you’re following my blog – hopefully, you’re learning something about Down syndrome.  At the very least, I hope you can see that Ben has Down syndrome and he has a very normal, regular, plain old life.  Just like the rest of us!

What is Down syndrome?  Let me give you the nuts and bolts (thanks to the National Down Syndrome Society):

“In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.” (emphasis mine)

Thinking about his physical development, the biggest surprise for me has been Ben’s low muscle tone.  He was an active baby when I was pregnant - flipping and pushing and kicking all the time.  Even when he was born, he had pretty good head and neck control.  He was rolling over within his first two weeks at home.  I thought he was going to surprise everybody with his muscle development.  But as he has grown, the low tone has become more evident.

Low tone affects speech and feeding - people use cheek and tongue muscles to speak clearly, to suck, to chew.  Low tone affects the digestive system - I could say a lot here about constipation ... but I won't.  Low tone affects gross motor - sitting, crawling, standing.  Low tone affects fine motor - the pincer grasp.

I have never thought so much about all the steps involved in learning how to move your body.  Ben has received speech therapy, physical therapy and occupational therapy at different intervals during his 15 months of life.  He rolled early, but it has taken a lot of time for him to be able to do an army crawl, and he just (yesterday and today) managed to move himself from a lying down position to sitting up.  Hooray!

Sometimes it is hard to watch other kids - especially younger kids - crawling, walking and talking so easily.  But mostly, I am able to appreciate the hard work that Ben puts in ... and the significance of his achievements.  Every developmental step is hard-won and worth celebrating.

Way to go, Ben!