BOOK REVIEW: Road Map to Holland

Each and every family raising a child with Down syndrome has a unique story to tell –of how they learned the diagnosis, how they handled the news, the reaction of family and friends, the sorrows and the joys involved in raising their child.

“Road Map to Holland: How I found my way through my son's first two years with Down Syndrome,” by Jennifer Graf Groneberg, is one such tale. This book is unflinchingly honest. At times it made me feel as if I was reading someone’s private diary and that I should put it down, that I should look away. I couldn’t. The book’s title comes from a piece written by Emily Perl Kingsley – “Welcome to Holland,” something that many families who are raising a child with Down Syndrome are introduced at one point or another.

Groneberg is a great writer – there’s no mistaking that. The emotional rollercoaster of her experience -- giving birth to premature twins and then learning 5-days later that the oldest, Avery, has Down Syndrome-- pulls you in and keeps you turning the pages.

I’ve often told people that when we learned through prenatal testing that Nikki would have Down syndrome that coming to terms with it and accepting it was very similar to going through the stages of grief. And that you can’t compare how my family handled the news to how another family handled it.

But I found myself drawing comparisons – and my reaction was no Disney moment of running through a meadow with birds chirping as they fluttered around my head. Nope, I sobbed uncontrollably at that doctor’s appointment and several others that followed.

I found myself at times wanting to shout at Groneberg and tell her that the diagnosis isn’t about her, it is about her son. I wanted to shout that she needed to end the pity party and start taking positive, pro-active steps. I’m still having trouble wrapping my head around fact that Groneberg didn’t call her state’s early intervention program shortly after her babies were released from the NICU, but waited until they were 10-months old. To me, that delay meant precious months were lost.

Groneberg does use the book to shine a light on some of the harder topics associated with raising a child with Down syndrome, including the varied reactions of family and friends to the news that your child has Down syndrome; and even the loss of a friend because of your child’s diagnosis. And like many other books on the subject, she doesn’t avoid talking about prenatal testing and the fact that 90 percent of women who learn that their child will have Down syndrome choose to end their pregnancy. She rails against those numbers, and even finds herself unsure of her opinions on abortion – which prior to having Avery was solidly prochoice.

Groneberg deserves accolades for her resources at the back of the book. The list covers everything from books for children to great resources for families, teachers or just those who want to learn more.

If it wasn’t for the fact that I was writing a review for the Mother-talk blog tour, I’m not sure I would have finished reading the book. I had trouble relating to Groneberg’s constant sense of melancholy and her long struggle to accept her son for who he is and not what she wants him to be.

Other readers, who are raising a child with Down syndrome, or a child with any special needs, might have a very different reaction to the book. Every family’s story is different, but it’s not always easy to relate to each other’s tales.

giving mom some grey hair

So Nikki has allergies and asthma and this time of year it's not uncommon for them to both be in full gear. But last night was a strange cosmic event.

She went to bed fever-free and just a bit sniffly. An hour and a half later she woke up with a 104.4 degree fever and coughing so hard she was spitting up. (Do other mothers try to catch bodily fluids as they exit their kids? What is it about becoming a mom that makes catching throw up suddenly seems like a normal and good thing?).

Because there was a bit of blood involved I called the pediatrician and soon we were off to Middlesex Hospital. But before leaving our house there were two hastily placed calls. The first to my husband at work asking if there was anyway he could leave early and the second to my parents letting them know I was dropping off a sleeping baby. (And a big thank you to Angelina, Matt and Ryan for covering last night so I didn't have to do the ER drill by myself - I owe you all chocolate this weekend).

So Nikki was poked and prodded. Pneumonia - nope, her chest x-ray was clear; ear infection - negative; strep - negative; flu - negative. End result it appears she has a respiratory virus, which severely aggravated her asthma.

When she woke this morning I expected a feverish child who would want hugs and cuddles all day. Negative to that as well. No fever, and when I last checked in at home, she was happily playing away, albeit still a bit sniffly. But really can someone explain how a child can go from no fever to 104.4 back to no fever in less than 12 hours?

As for me, I'm blaming the new grey hair I found in the bathroom mirror on Nikki.

As an aside - the new emergency room at Middlesex Hospital is quite nice. Way bigger than what I remember the old space being. I hope most of you don't ever have to go visit it, but if you do it's definately looks to be first class.

A benefit for all

My daughter was born with Down Syndrome, and so while she is only 4-years-old my husband and I have some serious concerns about providing for her future.

For us that means more than making sure we put some money away for college.

But it's a minefield.

Do we put away money and hope that we don't negatively impact her ability to get health insurance through Medicaid, if she ever needs it, or even to qualify for Social Security. Or do we not put anything in her name and hope the current social safety nets don't disappear.

Just today I found a notice from the National Down Syndrome Society in my e-mail inbox.
There's an alternative being offered up, but Congress needs to act. And so far none of Connecticut's delegation to the House of Representatives have stepped up to help co-sponsor the bill.

In very simplistic terms the bill (HR 2370) would establish a savings vehicle similiar to that of 529 college savings plans. What is allowed for withdrawals from the account is much broader but in theory that's how it would work.

A big bonus is that these accounts are designed not to impact Social Security and Medicaid benefits.

According to the NDSS: "Important aspects of the bill include: Anyone can contribute to the financial security of a loved one; Accounts are to be used for qualified expenses not compensated for by insurance or other sources: Educational expenses, Medical and dental care Employment training and support, After the age of 18, housing and transportation expenses, Moving, Assistive technology, and Community-based support services; Contributions are capped at $500,000."

Now these accounts would benefit more than just those with Down Syndrome. Any family who has to plan for a child who has a disability would benefit from a long-term planning tool.

Please take a minute and think if anyone you love is facing the troubling problem of planning for the future of a child with special needs and then contact your state's representatives and ask them to sponsor (and vote) for this bill.


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