A Gala at Gigi’s and a story from. . . the United Arab Emirates?

 

This is a story that appeared in The Khaleej Times, an English-language newspaper, last week, in the United Arab Emirates.

Over the weekend, Jillian and I were honored to speak at the Gigi’s Playhouse I Have a Voice Gala in Minneapolis. The Playhouse has over 20 locations in the US and one in Mexico, devoted exclusively to serving the academic and social needs of kids born with Down syndrome. Some 550 people attended, close to $100,000 was raised. Everyone loved the weekend, ┬áno one more than Jillian, who rode every ride in the amusement park in the middle of the Mall of America. You read that right. Next time I go to an amusement park, I’m expecting a Cheesecake Factory and six different places to buy gym shoes.

Every place we speak, I am struck by one, eternal truth: Parents of newborns and small children want to hear about hope.The medical profession remains fixed on clinical and medical issues, while all but ignoring the human issues. Parents don’t want to be bluntly told all the things their children likely won’t do, especially immediately after what should be one of life’s greatest joys. More bedside manner, please.

Telling Jillian’s story never gets old, because hoping never does. Potential needn’t be burdened with warning labels. It needs to be nurtured. We’re grateful so many people have found a little of that in the pages of An Uncomplicated :Life.

Expect. Don’t accept.

Paul

PS… If your group or association is interested in having Jillian and me attend one of your functions, please contact my representative at American Program Bureau Inc.: pkreiter@apbspeakers.com

Or feel free to e-mail me at pdoc53@gmail.com

Keep up with Jillian here or on my FB page, pauldaughertywriter

 

 

 

The purpose behind An Uncomplicated Life

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We’ve reached the 100-review mark on Amazon. We have 90 5-star reviews, and 7 4-stars. We have 2 1-stars… one was because the reader claimed she didnt get the book she ordered, so hadnt read it yet. The other must have thought one star was good. Loved it, she said.

Thank you.

I wrote the book for 2 reasons: Because people told me I should and, later, because I wanted parents and relatives of kids with disabilities to have something positive to reference, especially right after their special-needs kids are born.

The day Jillian was born — Oct.17, 1989, the day of the San Francisco earthquake — all Kerry and I wanted was for someone to tell us everything would be OK. That this child would be a blessing of a different kind, that she would teach us more than we would teach her, that she came by naturally several keys to life that lots of us struggle to attain.

Store shelves are full of self-help books and books of inspiration whose goals are to make us happier, better-adjusted people. If only everyone seeking such enlightenment could spend some time with our special-needs kids.

We wanted someone to tell us all that, on that first day.

No one did.

We got the hefty catalog of Won’t-Do’s instead.

I’m hoping An Uncomplicated Life has helped some of you navigate the pain and disappointment, and steered you toward the joy we found, and live to this day. Unlike most books on the subject, An Uncomplicated Life doesn’t end after a year or two or three. It ends with Jillian’s wedding. It only gets better. I promise.

If you have a minute, read a few of the reviews for An Uncomplicated Life. These aren’t critiques by professionals. They’re judgments made by folks living our lives.

Thank you for reading.

Expect, don’t accept.

Paul

 

 

 

 

 

 

 

Helping doctors to break the news…gently

IMG_0976Jillian Benfield, my social media pal from AZ, recently asked me for a couple sentences to describe our experience in getting the news from doctors that Jillian had Down syndrome. I could do it one word:

Awful.

Insensitive. Careless, witless, crass.

That was 1989. From what I’ve heard from new parents in 2016, it’s not a lot better. Twenty-seven years, and it’s not a lot better?

The doctor that told my wife Kerry said it off-handedly. Apparently, he assumed someone else had told her already. I wasn’t even at the hospital; I’d gone home to fetch our 3-year-old son from a neighbor’s, giddy to introduce him to his little sister. The phone was ringing as I walked into the door of our house, to retrieve some things before returning to Kerry’s room.

“They think Jillian has Down syndrome, Paul.”

If that wasn’t bad enough, they wanted to move Kerry out of the maternity ward the same day Jillian was born. The unsubtle inference being, “This is a happy place, and you are not happy.”

As I wrote in An Uncomplicated Life, that was the last bad day. We left the hospital the next morning, to begin our life’s work, which has been more of a blessing than we could ever have imagined. But the issue with the doctors remains.

Here’s a silver lining: A few weeks ago, a neonatologist at Cincinnati Children’s Hospital reached out to me. Here’s part of what she wrote:

“As a medical person, I have found a few gaps in our practice. The medical community has decided Down syndrome is a disorder we should screen for prenatally, yet we have no guidelines for what to do with that information, once we obtain it.”

She went on to say she was developing a program “to address this problem with a comprehensive approach to care and counseling, to address the medical issues, but also the emotional ones you talk about.”

Bravo!

Doctors have the medical stuff down pat. It’s the human side of it that needs big adjustments.

“I want these expectant parents to leave their visit with us better educated. . . and also with hope and knowledge that their child is a blessing, just like any other child.”

Perfect.

Children’s Hospital now has An Uncomplicated Life on a suggested reading list for parents of special-needs newborns. Once their budget has been established, they plan to buy multiple copies.

I urge all hospitals to consider doing the same. Give parents the diagnosis. Then give them a copy of the book. Hopefully, they will learn what the rest of us know already: We don’t know know what we’d do without our special-needs kids.

By the way, Jillian Benfield is on Facebook. She welcomes your input.

Thanks for reading. See. Don’t Look.